Stem cell research

Stem cell researcher to develop cellular therapy for digestive disorders

MARCH 22, 2016

Tracy Grikscheit awarded $7.1 million grant by the California Institute of Regenerative Medicine

Stem cell researcher Tracy Grikscheit

Tracy Grikscheit hopes to reduce or remove the requirement for immunosuppressive drugs.

Tracy Grikscheit principal investigator with USC Stem Cell and The Saban Research Institute of Children’s Hospital Los Angeles, has received a $7.1 million grant from the California Institute of Regenerative Medicine Translational Research program to develop a cellular therapy for the treatment of nerve disorders of the digestive system.

These disorders, called enteric neuropathies, include degenerative neuromuscular conditions as well as those caused by a deficient or missing nerve supply to the intestines. Currently, in many cases the only treatment is removing segments of intestine that do not have a properly formed nervous system.

“Our goal is to develop an ‘off the shelf’ cellular therapy to treat enteric neuropathies before patients require surgery or to rescue patients who still have symptoms following surgery,” said Grikscheit, who is also an associate professor of surgery at the Keck School of Medicine of USC and the USC Viterbi School of Engineering.

‘Superdonor’ cell

Working with human induced pluripotent stem (iPS) cells that have the ability to develop into many human cell types, Grikscheit proposes to generate nerve cells from “superdonor” iPS cell lines that are immunologically matched to a large portion of the population. Because these cells would match many patients, Grikscheit hopes to reduce or remove the requirement for immunosuppressive drugs that are often required for transplantation.

This cellular treatment, called Advanced Superdonor Cellular Enteric Neuropathy Therapy, could replace absent or diseased components of the enteric nervous system — the cause of medical conditions such as Hirschsprung disease. The work will include collaboration with scientists at Cedars Sinai Medical Center, University of Michigan and Cincinnati Children’s Hospital. Grant reviews made available publicly online praised the team as having “great expertise,” noting that “the team could perhaps be the best in the world for this indication.”

“The goal of our translation program is to support the most promising stem cell-based projects and to help them accelerate that research out of the lab and into the real world, such as a clinical trial where they can be tested in people,” said Jonathan Thomas, chair of the CIRM board. “The projects that our board approved today are a great example of work that takes innovative approaches to developing new therapies for a wide variety of diseases.”

https://news.usc.edu/93096/stem-cell-researcher-to-develop-cellular-therapy-for-digestive-disorders/

Regrow oesophagus to join gap

Saturday, Apr 9th 2016

Young man becomes the first patient in the world to regrow his oesophagus after surgeons rebuilt his throat following car crash 

1/ The un-named man suffered devastating injuries in a following a car crash which destroyed his oesophagus. 2/ Surgeons at the time fitted metal plates to the man’s throat but these corroded, again threatening his life. 3/ Medics replaced these plates with cheap metal stents and covered them over some donated human skin. Amazingly, the skin samples grew with the aid of the patient’s own platelets, regenerating his shattered oesophagus.

A young man has become the first patient in the world to regrow an oesophagus inside his body. Doctors last night welcomed the breakthrough as a milestone in regenerative medicine, which offers particular hope for those suffering from oesophageal cancer. Experts, including a British-trained doctor, built a simple scaffold from cheap metal stents and human skin – and, to their surprise, the man’s body healed itself.

1st ever regrow

The un-named victim suffered devastating injuries in a car crash ago and when the original repair failed, a British-trained doctor had to use a pioneering new technique to refashion the man’s oesophagus allowing the skin cells to regenerate, allowing him to swallow normally. The patient, who has not been named, was 24 when he was taken to hospital with a severely damaged oesophagus – the food pipe which connects the mouth to the stomach. Five years earlier, metal plates had been inserted into his spine after a car accident. These had been corroded, leading to a huge abscess in his chest which attacked his oesophagus. Surgeons tried several times to patch up the tube, but it had become completely disconnected, leaving a 2in gap which was impossible to reconnect.

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Doctors were amazed that after four years, when they removed the metal stents, the oesophagus was completely repaired, file photo

Professor Kulwinder Dua, the gastroenterologist who carried out the operation, said the result promises to change the way scientists view regenerative medicine. Until now, experts have focused on harvesting stem cells – ‘blank’ cells which can act as a repair kit for the body – and altering them before putting them back into a patient. But Professor Dua, who trained at Aberdeen University before moving to the US, said the body seems to have its own ability to regenerate organs as long as there is a structure for them to build around.

He added: ‘If you cut your finger you do not spray it with stem cells, it heals itself. The blood is flowing with stem cells and it has the ability to do remarkable things … You put the ingredients together, you put it in the oven and it comes out fine.’ Professor Dua, whose results appear in the Lancet medical journal today, said the technique could be used to treat oesophageal cancer, which affects around 9,000 Britons a year. If trials are successful it could become widely used.

Professor Paolo De Coppi, head of surgery at London’s Great Ormond Street Hospital, said: ‘While this is only one patient it is very promising indeed. This technique is cheaper, simpler and most importantly safer for the patient than engineering tissue using stem cells.’

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Anabela Kleyn

Girl, two, known as ‘Bubbles’ who suffers 14 serious medical conditions including a tethered spinal cord and a missing right ear has to see 70 different doctors

A two-year-old girl who has already had to endure gruelling spinal cord surgery faces a lifetime of operations due to the staggering 14 serious medical conditions she is currently battling. 

Anabela Kleyn may seem like your average toddler with her cheeky smile but she has been described by doctors as ‘medically complex’ given the rare number of conditions she was diagnosed with shortly after birth.

She currently sees up to 70 specialists at Sydney Children’s Hospital due to a long list of conditions including limb defects, additional ribs, being born without her right ear, spina bifida and issues with her throat that can often stop her eating and breathing.

Two-year-old Anabela Kleyn has been diagnosed with 14 medical conditions including limb defects, additional ribs, being born without an ear, spina bifida and issues with her throat that stop her breathing

Two-year-old Anabela Kleyn has been diagnosed with 14 medical conditions including limb defects, additional ribs, being born without an ear, spina bifida and issues with her throat that stop her breathing. None of these serious issues were picked up when her 34-year-old mother Sarah Pearce was pregnant and only came to light when Anabela had to have surgery to connect her stomach to her food pipe just 48 hours after she was born. She underwent gruelling spinal cord surgery at the end of last year to de-tether her spinal cord and remove a lipoma tumor.Anabela – whose nickname is Bubbles – will already have to have another 10 major surgeries by the time she is 12. She was also diagnosed with permanent sleep apnoea in February, which means she has to sleep with a machine mask so she doesn’t stop breathing every two minutes. ‘Since she was born she has been diagnosed with 14 separate medical conditions, including a very rare condition called VACTERL – it’s been really stressful,’ Ms Pearce told Daily Mail Australia.’It’s quite unique having all of these conditions in the one little body. She sees up to 70 specialists and presents to about 14 different clinics within the Sydney Children’s Hospital.’

None of her issues were picked up when her mother Sarah Pearce was pregnant and only came to light when Anabela had to have surgery to connect her stomach to her food pipe just 48 hours after she was born

None of her issues were picked up when her mother Sarah Pearce was pregnant and only came to light when Anabela had to have surgery to connect her stomach to her food pipe just 48 hours after she was born.Ms Pearce, who is a single mother, is unable to work because Anabela needs full time care. ‘She needs to be watched constantly,’ she said. ‘Eating is an issue because she chokes and when she’s moving a lot and breathes in her trachea collapses and she starts to gasp.’ The stress of keeping on top of Anabela’s long list of conditions and hospital appointments has been an emotional struggle for her mother ‘It’s so hard because I can’t fix her, I can’t fix my baby,’ an emotional Ms Peace said. ‘It’s just a roller-coaster. I never thought I’d be in a situation like this. It’s left me feeling scared and frightened.

‘Mentally she is bright as a spark. She is amazing, she is so brave and strong – that’s what makes it easier.’

Anabela was also diagnosed with permanent sleep apnoea in February, which means she has to sleep with a machine mask so she doesn't stop breathing every two minutes

Anabela was also diagnosed with permanent sleep apnoea in February, which means she has to sleep with a machine mask so she doesn’t stop breathing every two minutes. Ms Pearce had to leave her family and friends to move from the Blue Mountains to Sydney just so they could be close to the children’s hospital. Being a single parent with no steady income, Ms Pearce manages to survive on $1,200 a fortnight in government benefits ‘Anabela has everything she needs, I go without so I make sure I can provide for her,’ she said A friend of Ms Pearce’s set up a crowd-funding page last month to help cover the expensive and rising cost of Anabela’s critical medical equipment, including a $2,000 CPAP machine to help her breath at night. 

Sydney-based Conti Property Group. ( http://contipropertygroup.com.au/).  found the GoFundMe page and donated enough money to buy most of the medical equipment – something Ms Pearce says she will be forever grateful for. Ms Pearce says she has also relied heavily on the support of a birth defect website created by Steve Wyles to deal with the emotional struggles. 

For more information or to donate money to Anabela Kleyn,

visit www.gofundme.com/anabelakleyn.

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Magnet Procedure

WakeMed doctor fuses newborn’s foodpipe without surgery

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From left, parents Evan and Suzanne Dapo with their 8-week-old daughter Annalise Dapo and WakeMed pediatric surgeon Dr. J. David Hoover all laugh at the question if the Dapo’s daughter had become a “magnet” for attention during a Thursday interview in the pediatric ward at WakeMed Hospital, Raleigh. The laughter was generated because of a medical breakthrough by Dr. Hoover and staff at WakeMed Pediatrics in the repair of Annalise’s incompletely formed esophagus between her mouth and stomach by stretching the two ends to meet by use of attracting magnets slowly drawing together, thereby avoiding more serious surgery.

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RALEIGH-They took turns cradling baby Annalise before a firing line of video-cams and photographers recording the scene in an intensive care unit at WakeMed Hospital in Raleigh. As Annalise enthusiastically sucked her formula bottle, mom, dad and doctor fielded questions about the lifesaving procedure performed for the first time in the United States.

The 8-week-old was born at WakeMed with a partially missing esophagus, or foodpipe, which came to a dead end. Lacking about 1.5 inches of esophagus, the newborn survived by means of feedings through a gastric tube inserted through a port in her side. Less than two weeks ago, WakeMed’s Dr. J. David Hoover, a pediatric surgeon, fused the baby’s two disconnected foodpipe sections, making the repair without surgery.

Hoover pulled it off by inserting magnets into the two blind sections of esophagus and allowing magnetic force to pull both ends together to create a single organ. On Friday, he demonstrated the magnet device, letting the magnetic nubbins vibrate as they drew near and then snapped together. The magnets used on Annalise were removed Monday, and she took her first sip later that day. By Friday, Annalise imbibed formula like a pro.

“It’s definitely a medical breakthrough,” Hoover said Friday. “And their hospitalization bill is on the magnitude of hundreds of thousands of dollars less.” Annalise will be going home to Wake Forest on Sunday, at a tender age of 60 days. Had surgery been required, she would have been sedated for weeks and hospitalized several more months. The pint-sized pioneer is the first to undergo nonsurgical fusion of the esophagus in the United States.

“It was jaw-dropping,” said Annalise’s father, Evan Dapo, a physician assistant. “Having what’s technically not even a surgical option is just amazing.”

Little-known procedure

Only about 1 in 80,000 babies is born with a condition such as Annalise’s. She was able to be treated with magnets because Hoover happened to know about the procedure from a medical article. “Not a lot of people know about it,” Hoover said. “There’s no sutures, no incisions.” Hoover contacted the inventor, Dr. Mario Zaritzky, a pediatric radiologist at the University of Chicago’s Comer Children’s Hospital; Zaritzky then traveled to Raleigh to advise WakeMed specialists.

Reached by phone Friday, Zaritzky said most children born with a partially missing esophagus have a foodpipe growing into their windpipe, or trachea. In those cases, surgery is required to disconnect the two wrongly fused pipes, and it makes sense to use surgery to repair the esophagus, too. In Annalise’s case, though, the foodpipe was not connected to anything else, just missing a section, so it made sense to try magnets without surgery. Even so, doctors had to wait for Annalise to gain at least 2 pounds before the magnet procedure could be performed.

Winston-Salem device

Zaritzky’s device was developed and manufactured in Winston-Salem by Cook Medical. It was approved for humanitarian use in this country just two years ago.

While Annalise is the first to go through the magnet procedure without surgery, three others have been treated in the U.S. with a combination of magnets and surgery. And nine have been treated with the magnet procedure in Argentina, where Zaritzky originally came up with the concept. In all, the procedure has been used 13 times in the past 14 years, Zartitzky said. At WakeMed, doctors noted that Annalise’s magnet therapy stretched her foodpipe together within 36 hours. Once the magnets “mated,” her esophagus self-grafted within a week. “This is like a miracle,” said Dr. Duncan Phillips, WakeMed’s director of pediatric surgery. “I’ve been doing this for 19 years and I have never seen anything like this.”

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Five year-old with special needs has achievements recognised

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A FIVE-YEAR-OLD boy with special needs has won an award recognising his courage in overcoming his difficulties.

Casper Dowson, From ENGLAND, Etherley Dene, Bishop Auckland was awarded one of four schools’ awards at Shildon’s Children and Young People’s Action Network (SCYPAN) Young People’s Awards on Wednesday, November 25 at Shildon Civic Hall.

The determined and resilient boy, who attends the town’s Timothy Hackworth Primary School, suffers from XYY syndrome, a rare genetic condition affecting one in 3,500 boys. Males with the condition have an extra Y chromosome which tends to make them very tall. They may also suffer with learning and behavioural difficulties.

Casper was also born with oesophageal atresia, an abnormality in his gullet which makes eating difficult and for which he has had several operations. He also has problems with his balance and speech development.

Despite these challenges, Casper has proved himself a determined youngster, nowhere more so than at school. He was nominated for the school’s young achiever award by his headteacher, who, along with the school’s special needs co-ordinator, had no hesitation in rewarding Casper for his hard work and independence.

Casper’s mother, Val Dowson said: “He stood out for all the right reasons. He wasn’t chosen because of his conditions or his medical needs. He stood out because, against all the odds, he’s fought through and worked hard.”

Funded by Livin, Hays Travel, the Variety Show, Shildon Town Council and Darlington Chair Cover Hire, the awards evening recognised and rewarded the young people of the town for all their hard work and dedication over the past year.

Also receiving awards were: Lauren Atkinson (Arts Creative Award), the cast of Les Misérables from Sunnydale Campus Greenfield Community College (Arts Performing Award), Nicola Stevens (Sports Award) and Owena Saunders (Young Person’s Choice Award). Timothy Hackworth School Council – Ben Hopper, Jessica Costello, Brendan Haigh, Ethan Ingram, James Plews, Kristian Welch, John Taylor, Ashton Houlahan, Rachel Jones and Millie Sanderson – received the Community Champion Award.

As well as Casper’s, Schools Awards were presented to Sophie Story (Sunnydale Campus, Greenfield Community College), Anthony Scott (St. John’s C of E (Aided) Primary School) and Harrison Taylor from Thornhill Primary School.

The Chloe Clark Special Achievement and Recognition Award – awarded for determination through hardship – was presented to Mia Day, Matthew Harnett, Caity Connor and Keira O’Brien.

THIS SHOW’S Never give up hope x

http://www.thenorthernecho.co.uk/news/local/southdurham/bishopauckland/14111060.Five_year_old_with_special_needs_has_achievements_recognised/?ref=rss&utm_source=dlvr.it&utm_medium=facebook

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40 surgeries in her 18 months

Angel Shane Robinson inspired by his family, including daughter who has had nearly 40 surgeries in her 18 months

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 Angels outfielder Shane Robinson poses with wife Jessica and their two daughters, Tinley, left, and Harper. The family does not get to see each other much because he is on the road and Harper has been in Boston for her care.

ANAHEIM – When Jessica Robinson looks at her 18-month-old daughter Harper, she sees some of the same traits that have helped her husband, Shane, forge his way to back to the major leagues. “She’s just like Shane,” Jessica said. “She operates with a chip on her shoulder. She fights pretty well for herself. You’d never know what she’s been through. Harper was born with esophageal atresia, a condition in which the esophagus doesn’t connect to the stomach. Harper has had nearly 40 surgeries, including 10 major procedures in which doctors have opened up her chest or abdomen. Every meal of her young life has come through a feeding tube that connects directly to her small intestines.

“She’s been through quite a bit,” Shane said. “But you would never know if you saw her. She’s super happy.” While Robinson, an Angels outfielder, has been clinging to a baseball career that has included four organizations in the past two years, his wife has been doing the hard part.

Jessica has been toting two kids – including 4-year-old daughter Tinley – around the country. Jessica and the girls spend much of their time in Boston, where a children’s hospital specializes in esophageal atresia. Otherwise, they go between their home in Atlanta and wherever Robinson is playing. Besides occasional visits from his family, Robinson relies on FaceTime to maintain contact. In that sense he is like many baseball dads who are away from their families. It’s common for players away from home to feel tugged in two directions, but it’s even more complicated in a situation such as Robinson’s.

“Baseball kind of helps me because I can be engaged and hang out with the guys and it takes my mind off it,” Robinson said. “The worst part is knowing my wife is dealing with most of it when I’m away. I try to be aware of that as much as possible. It’s tough. ”Robinson, 31, was drafted by the St. Louis Cardinals out of Florida State in 2006 and reached the majors in 2009. He bounced between the majors and minors for a few years. In 2013, he homered against the Dodgers in the NLCS and played in the World Series.

At 5-foot-9, Robinson is the prototypical undersized overachiever. Fans in St. Louis so appreciated him, despite his limited role, that they greeted him with a standing ovation when he returned last year as a member of the Minnesota Twins. The elements of Robinson’s makeup that the Cardinals and their fans enjoyed so much are exactly what Jessica would come to see in their daughter.

Before Harper was born, the Robinsons learned from prenatal testing that something was wrong. It turned out she had the rarest form of her condition. From the moment Harper was born, her life was a series of agonizing ups and downs.

“It’s kind of a roller coaster,” Shane said. “We’ve had big setbacks. It’s been back and forth her whole life.”

All the while, Robinson has been dealing with the life of a major league 25th man. The Cardinals released him around the time Harper was born. The Twins signed Robinson and he spent most of the 2015 season in the majors, but he had to leave the team on three occasions to join the family for one of Harper’s operations. “As a guy, you try to take as much as you can on your shoulders,” Robinson said. “It’s tough with them being in Boston and me being in Minnesota. I tried to stay focused on my job to provide and go out there and produce on the field.”

Jessica said there were times when her husband wanted to stop playing baseball entirely so he could be with them, but she talked him out of it.

“There’s been a couple conversations we’ve had about whether he should be in Boston or continue playing baseball,” Jessica said. “I’m confident with what I’m doing. It’s extremely hard, but when he goes back to baseball, his focus is not what he can do in his career, but it’s more how he can provide for his family.”

To get an idea of the Robinsons’ perspective, Jessica said Shane’s promotion to the Angels this week was a blessing because the insurance is much better for a major leaguer than a minor leaguer. Jessica also said all of Shane’s organizations have been helpful. “We’ve gotten a ton of support from the baseball community, the Boston wives, the Twins wives and the Cardinals wives,” Jessica said. “We’ve gotten so much support.” Former Red Sox pitcher Wade Miley let the Robinsons stay at his place during one of their extended stays in Boston. Meanwhile, over the winter Robinson was again looking for a job after the Twins released him. The Cleveland Indians signed him and he expected to have a shot to make the team. But the Indians then added veteran outfielders Marlon Byrd and Will Venable, squeezing out Robinson. Just as he was dealing with that, there was an emergency with Harper, requiring Shane to leave spring training for Boston. Her esophagus had attached to one of her lungs, requiring yet another procedure. The operation went well and the Robinsons are actually optimistic they are nearing the finish line with Harper, who may soon be able to begin learning to eat normally.

That good news roughly coincided with the Angels offering him a deal after he had exercised the out clause in his contract with the Indians. After four weeks in the minors with the Angels, Robinson got a shot to return to the majors because of Craig Gentry’s back injury. His family seized the opportunity to come see him in Milwaukee this week, the first time they’d been together since March.

The girls smothered Robinson when they saw him. “They love their dad so much,” Jessica said. “It was worth every hassle through the airport to get out and see him.” After two days in Milwaukee, the Robinsons headed back to Atlanta for a brief break before a return to Boston for more tests.

If all goes well, the family may be able to reunite more regularly and for longer periods, wherever Robinson is playing. Soon, they are hoping, the daily challenges will not involve surgeries or hospitals, but simply learning to do all the things that a normal little girl learns. Babies with her condition are normally behind their peers in growth and development. But Jessica looks at Harper and sees Shane.

An undersized overachiever.

“She’s a fighter,” Jessica said. “She’s catching up for her age. She’s not walking yet. She conquered crawling. She’s a little bit behind, but she’s pretty determined.”

http://www.ocregister.com/articles/robinson-714924-jessica-harper.html

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My Baby Was Born With VACTERL Association:

One Mom’s Story

Coping with a scary diagnosis just moments after birth

Click on the underlined RED Writing

 

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“Rowen is a healthy and happy baby boy, and while our normal may not be the version everyone else expects, it is ours, and we are grateful for it. “

“Your son is beautiful, and everything looks fine, except I don’t see an anal opening.” Imagine hearing those words from your doctor just minutes after bringing your baby into the world. I didn’t hear anything that came after that sentence. Beyond those words, I froze – and it was only the beginning.

Little Rowen was diagnosed with what is known as VACTERL association. It is not genetic, it is not a syndrome and it is not a disease. VACTERL is an acronym that stands for Vertebral, Anal, Cardiac, TraceoEsophageal, Renal and Limbs – all of these systems develop at about the same time in utero and can have malformations. If two or more of these systems is affected, a child is considered VACTERL, capitalizing the letters of those conditions that they have. After many tests and much NICU observation, Rowen was diagnosed as VACTERL.

What Rowen’s diagnosis means is that he has a partial sacrum agenesis of the spinal cord, an imperforate anus (also known as IA) and traceoesophageal atresia, or EA. In simple terms, this all means that Rowen is missing segments of his spinal cord within the tailbone, he was born without the lower colon and an anal opening, and his esophagus was not attached to his stomach. At 12 and 48 hours old, Rowen underwent two surgeries – one to place a colostomy, and another to reattach his esophagus to his stomach. We spent one month in the NICU to recover, and with a tender tummy, it took a lot of that month for Rowen to learn to eat, which was the most frustrating part of our NICU stay.

After our one-month stay, Rowen was discharged, and we were finally able to come home. We spent three months together at home, and life was our version of normal. Rowen experienced severe reflux due to his EA – he threw up more than he was taking in, and we visited our pediatrician weekly to monitor weight gain and try all sorts of reflux medications. We were documenting everything, including every milliliter of milk he ate, every diaper change and every time he threw up. We were also changing a colostomy bag, which is not exactly an easy task. In the middle of all this adjustment, my husband and I made time to research more about what an imperforate anus was, and what our next step would be for Rowen.

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The next part of our journey took us to Nationwide Children’s Hospital and their Colorectal and Pelvic Reconstruction Center in Columbus, Ohio. After flying to OhioDr. Marc Levitt reconstructed Rowen’s colorectal region by performing a Posterior Sagittal Anorectoplasty, and later performed a Colostomy Reversal, which finally reconnected the bowels to create a fully-functional digestive system.

Today, we are home, and we are a full family of four. It may have taken months for us to get here, but Rowen is a healthy and happy baby boy, and while our normal may not be the version everyone else expects, it is ours, and we are grateful for it.

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When this journey first started, I had no idea what VACTERL association was or how to handle the changes that came with it, because VACTERL association isn’t something people openly discuss. It was a challenge to hunt down reliable information meant for parents of VACTERL babies, which made it all the scarier walking into a world of hospital hallways and multiple surgeries. Every VACTERL child is different, and yet the journey VACTERL families experience is so similar. Luckily, Rowen and my family had an amazing community of support. Rowen may face challenges as he grows up, and I will in turn be challenged as a parent, but this very challenging time in our lives as a family has also been the most rewarding. I hope that by sharing my story, I can bring awareness about this diagnosis to other families.

Erin Hughes is a mother of two young children, former elementary school teacher and professional photographer. She and her husband are raising their family in Wichita, Kansas. She is sharing her story about her youngest child’s medical journey in hopes of raising awareness and support for other families facing a rare diagnosis. 

http://health.usnews.com/health-news/patient-advice/articles/2016-05-04/my-baby-was-born-with-vacterl-association-one-moms-story

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Six Life Lessons From the NICU

Six Life Lessons From the NICU

I closed my eyes. If I couldn’t see then I could pretend that I wasn’t there. Then I wouldn’t feel like I was intruding on a grief so raw I could almost taste it deep in my throat. I was helpless. And useless.

But there was nowhere to go or hide. Not in the neonatal pump room.

Side by side we sat, exposed literally and metaphorically, hooked up to machines pumping milk into bottles. Milk that they said was vital medicine now – medicine for our ailing, failing babies. For every nine families that walk out of the door of the maternity wing elated yet flagging, one will spend time in the neonatal unit. And within each unit is this room. A room that if it could talk would tell you such tragic tales. That has witnessed the deepest depths of despair.

I didn’t know this lady. Yet I knew this lady too well.

She had told me her tale in a numb monotone the day before. How she’d been blue lighted across the county to give birth prematurely to her longed-for twins. How one had later died and the other was now locked in a private turbulent battle to survive. She told me all this in the way you would tell someone you’d lost a tenner at the shops. Quite bummed out at her bad luck. She was not so numb now. Now she felt every painful emotion all at once. There was nothing I could do for her except sit silently beside her as I double pumped milk for my baby who was hooked up to similar machines in the next room.

This is just one of many sad stories I heard and witnessed during our 17-day stint in the neonatal unit. Quite a short visit compared to many, but at the time it felt like a lifetime. Five years on, I can still recall the smell of that room; the beeps of the machine; the strange comfort of the sterilizing routine; feeling shy during kangaroo care in crowded wards; the quietness of quiet time. The heart-broken memory of leaving hospital to go home without my baby; the rush of emotions as I drove back to the unit in the early morning light wondering what I would find when I walked back in, despite calling ahead before I left home each day.

I can still feel that coldness (such indescribable coldness) of walking around my house with empty arms after the heat of pregnancy and the utter loneliness of setting an alarm to pump milk at 3am while the rest of the world slept on. A neonatal spell is an experience like no other. No matter how long you spend on the unit, it leaves an indelible mark. It changes you in many ways and shapes your attitude going forward.

Here are just a few things that I learnt:

Things can’t always be fixed

When something bad happens to a loved one or a friend, it is human nature to want to try to put things right. But you know what – sometimes things can’t be fixed. And that is that. I met a lovely lady on one of my first days in neonatal who told me that her son had been starved of oxygen at birth and as result had suffered irreversible brain damage. There must be a way to fix him I said arrogantly (and ignorantly). I wouldn’t accept it. It was too sad. And unfair. Six weeks in, she was well versed in this reaction. With a dignity that left me shamed she stated quite kindly, but firmly: no, we can’t fix this.

Shut the hell up and listen
It was in the neonatal unit that I began to learn the fine art of shutting the hell up and just listening. The temptation when someone is telling you their troubles and fears to go “hey yeah me too” and then share your experience is strong. But there is a time and place for it. Empathy is sometimes not necessary – sometimes someone in pain just needs a willing ear.

Terrible things happen
Horrible, horrible thing happen all the time, yet there is nothing rawer than sick and dying babies. And in the neonatal unit you are surrounded by them. If you sit there long enough you hear the alarms going off and the medics swooping out of the room en-masse to try to save a life; you see the man and woman in the family room inconsolably clutching at each other locked in their own private hell; you notice that the bedside space of the baby in the corner is empty again for the 10th day in a row and the nurses are taking turns to dole out the cuddles. Terrible things happen and that is just life.

Don’t sweat the small stuff
The gift of perspective is never greater than when your child is ill. All those little things that bothered you suddenly disappear. I remember a friend telling me that I would have all the sleepless nights to look forward to when he came home so to enjoy the nights when he was looked after by the nurses. I longed for the sleepless nights as it would mean he was home beside me and mentally promised myself that I would never ever moan about stuff like that ever again. Obviously I did because I am not from Stepford. But I never saw it as a personal witch hunt from the universe in the way I did with my older two. Don’t get me wrong I love a groan as much as the next person but some of the things that people grumble about are, still to this day, a bit alien to me. And I’m grateful for that.

Don’t compare
It is impossible not to these days especially when picture perfect presentations of people’s lives are being thrust at you from all directions. Everyone else’s lives always seem better on paper. I used to get massively jealous of all those families I saw leaving the hospital after seemingly uncomplicated deliveries. How I longed for their easy lives. How naive. Who am I to guess at strangers’ lives. Everyone has their own crap and all crap is relative.

As one door shuts…
Things aren’t always as I expected with my child. Many times over the past five years this has made me cross and sad. I remember feeling so cheated of his first few weeks of life during our hospital stay, but the life lessons that period taught has held me in good stead for the rocky times that came. Now I am sort of grateful for the time there. Things often have a way of working out just fine. And it is amazing how strong you find yourself to be at times.

So if you are currently down in the pump room, you don’t know it yet but you are now part of a new club. There is a strange solidarity between us neonatal mums. We try and look after our own. You can’t really explain it properly to people who’ve not been there. But know we are all rooting for you.

I can’t tell you all will be okay because I don’t know that. But I can tell you that our okay was not the okay we wanted or expected, but it is a lovely different sort of okay all the same. In fact our okay goes way beyond okay almost every day.

So keep on hanging on in there. You’ve got this.

http://www.huffingtonpost.co.uk/alison-bloomer/six-life-lessons-from-the-nicu_b_10127050.html

 

Help from the air

Phoebe’s Flight to Carins

 We went on a Family holiday to visit the Top of Australia, Cape York. It’s a massive drive in the 4×4 with the camper in tow, we had planed it for over 6 months. 

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We drove through the day and camped at night finally we got to our destination where we spent 4 days exploring it was beautiful, relaxing and priceless.

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On our way home we stopped at some waterholes and Phoebe started to get temperatures and a crackle sound on  her back. I gave her panadol suppositories and it brought the temps down during the day but at night was when it was the worst, by the 3rd day her temps were really high a chesty cough and her breathing was very tugging in her throat and just below her ribs on her belly. She was struggling and very tired. The closest hospital was more than a 4 hour drive away and it was still dark when we left at 4.30am along corrugated dirt roads to get to the Weipa Hospital. When we arrived, we were taken straight in and I explained about Phoebe being born with TOF – OA unable to swallow and that the bad cough that she had was partly normal it was the wetness on top of the cough that I was concerned about. She was dehydrated and needed some oxygen, so to get the fluids into her by drip the Doctor decided it was best if Phoebe was sedated as when they were putting the nasal prongs across her nose she would just rip them off.

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Phoebe had an x-ray of her chest and it showed that she had Pneumonia.

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Phoebe started to deteriorate and was struggling to breathe, I thought that we could lose her, It was just a cold? I cried. That’s when the Doctors decided to send Phoebe by plane with the Royal Flying Doctors to the Cairns Base Hospital.

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It all got very scary when the  Doctors were talking about intubating her so she was safe on the plane, But this frightened me so much I had explained that I was concerned about them doing damage to her esophagus or her not waking up so they rechecked her gases this test measures the level of O2, Carbon Dioxide, pH and others in her blood and they came back and made the decision to let her board the plane the way she was. Brad and the Boys stayed behind at Weipa to get a good nights sleep before driving 10 hours to Cairns.

The flight from Weipa to Cairns was only 2 hours, I hadn’t been in a small plane before I was nervous but when I saw above the clouds I felt calm and I knew that Phoebe was going to be OK today we were only visiting Heaven.

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On the plane Phoebe asked for a bottle of milk and the Doctor said it was fine, it was the first bottle she had in 4 days.

We arrived in Cairns and over 4 days she improved on oxygen antibiotics and ventolin.

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We were discharged, then continued to travel home.

We as a Family would very much like to thank the Royal Flying Doctors of Australia for their dedication and total commitment in the job they do.

Sydney Children’s Hospital and TOF information sheet

www.schn.health.nsw.gov.au/parents-and-carers/fact-sheets/oesophageal-atresia-andor-tracheo-oesophageal-fistula

 

New helicopter takes off with Theo and Sheffield medical team ENGLAND 16 May 2013

newsbabytheo

A baby boy who needed emergency surgery was the first to be flown in a new charity helicopter supported by a Sheffield medical team.One day old Theo Mikova was transferred on a 15 minute flight from Scarborough Hospital to Hull Royal Infirmary after his mum gave birth during an emergency caesarian.The Children’s Air Ambulance ­charity’s lone helicopter is the country’s first dedicated to youngsters and used the medical team from the Embrace Yorkshire & Humber Infant & Children’s Transport Service www.thechildrensairambulance.org.uk/ to keep him stable.

After a difficult labour mum Denisa Mikova (19) had to be put to sleep to give birth to baby Theo, born at 4lb 14oz, five days late. Once Theo arrived doctors realised he needed an operation on his gullet (oesophagus) which did not join correctly to his stomach and could have made him very ill. Dad Lee Ratchford (26), of Scarborough, North Yorkshire, said: “My girlfriend came round and was still in a lot of pain and we got her into her own little room.

“That was when the doctor came and explained to us about what was wrong with him and that he needed surgery. As soon as the word surgery came in I started crying and so did Denisa. “But we were assured everything would be alright and that was when we found out he would be transferred to Hull. We thought we would be going by ambulance but then the helicopter came for him.”

 newsbabytheohelicopter 

 He was transferred for emergency surgery via The Children’s Air Ambulance, while being looked after on board by The Children’s Hospital, Sheffield’s Embrace medical team. This was the first emergency airlift of its kind to happen with the Children’s Air Ambulance and Embrace teams. Meanwhile Denisa and Lee travelled an hour to Hull in an ambulance to join him when he came out of theatres. “It took 15 minutes and by road it was about an hour,” Lee added. “I do appreciate a lot about what that ambulance did for us. We were an hour and if that hadn’t been there Theo would have had to wait an hour in the ambulance with all the shaking around.”

Theo had a tracheo-oesophageal fistula operation and is now recovering well with no expected complications.

Dr Stephen Hancock, Lead Consultant for Embrace, which is part of Sheffield Children’s NHS Foundation Trust, was in charge of the infant’s care on board the flight.He said: “Embrace were delighted to work with The Children’s Air Ambulance on their first ever emergency transfer, providing the medical and nursing teams to help get this child to the right hospital for surgery fast.

“All the teams involved have been working really hard to get to this point and it is gratifying to see the helicopter in the air. “This service is so vital because quicker transfer times mean that our medical teams are available to look after more critically ill children in the north of England.” The Children’s Air Ambulance aims to slash the time it takes to get children to specialist hospital units. The helicopter features the latest ­paediatric and intensive care equipment and travels up to 200mph. Before the service, sick children often faced road journeys which could take hours depending on the distance involved.

Chief executive Andy Williamson said the charity would increase survival rates by reducing travel times and allowing ­specialists to ­accompany sick children during the journey.He said: “Around 5,800 critically ill ­children every year require ­transportation from and between paediatric intensive care units. “When a child is suffering from a serious illness, the specialist life-saving ­treatment they need can sometimes be hundreds of miles away.

“Journeys by land can take considerable time, as well as being uncomfortable and distressing for the child, and often medically challenging.”

11933049_10206419979529944_1148087283_n  How this little fella looks today, The Family of Theo would like to thank all involved in the above air lift of their son Theo.

Our lifesaving missions are funded by your generous donations. We do not receive any government funding. www.thechildrensairambulance.org.uk/

Websites of intrest

Sleeping With Weighted Blanket Helps Insomnia And Anxiety, Study Finds

Click on the red text to link you though to other links useful on this subject.

How can something so simple as sleeping with weighted blankets be a solution to stress, anxiety, insomnia and more? Messed up sleep can create a long list of secondary issues that can quickly become primary concerns if insomnia or other disturbances continue untreated. Lack of sleep, whether it’s medically related or anxiety-driven, can throw off your normal functioning during the day. Concentration becomes difficult, productivity at work or school begins to suffer, irritability can have you lashing out at family and friends, and you also become at risk for serious health issues like heart attacks.

Deep pressure touch stimulation (or DPTS) is a type of therapy that almost anyone can benefit from. Similar to getting a massage, pressure exerted over the body has physical and psychological advantages. According to Temple Grandin, Ph.D., “Deep touch pressure is the type of surface pressure that is exerted in most types of firm touching, holding, stroking, petting of animals, or swaddling. [sic] Occupational therapists have observed that a very light touch alerts the nervous system, but deep pressure is relaxing and calming.”

Traditionally, weighted blankets are used as part of occupational therapy for children experiencing sensory disorders, anxiety, stress or issues related to autism. “In psychiatric care, weighted blankets are one of our most powerful tools for helping people who are anxious, upset, and possibly on the verge of losing control,” says Karen Moore, OTR/L, an occupational therapist in Franconia, N.H.

So, How Does It Work?

A weighted blanket molds to your body like a warm hug. The pressure also helps relax the nervous system.  It’s a totally safe and effective non-drug therapy for sleep and relaxation naturally. Psychiatric, trauma, geriatric, and pediatric hospital units use weighted blankets to calm a patient’s anxiety and promote deep, restful sleep. In a similar way to swaddling comforting an infant, the weight and pressure on an adult provides comfort and relief.

When pressure is gently applied to the body, it encourages serotonin production, which lifts your mood. When serotonin naturally converts to melatonin, your body takes the cue to rest.

Weighted blankets are typically “weighted” with plastic poly pellets that are sewn into compartments throughout the blanket to keep the weight properly distributed. The weight of the blanket acts as deep touch therapy and acts on deep pressure touch receptors located all over your body. When these receptors are stimulated, the body relaxes and feels more grounded and safe, and clinical studies suggest that when deep pressure points are triggered they actually cause the brain to increase serotonin production.

Weighted blankets are especially effective at alleviating anxiety. A 2008 study published in Occupational Therapy in Mental Health showed that weighted blankets offered safe and effective therapy for decreasing anxiety in patients. These results were confirmed in a 2012 study published in Australasian Psychiatry, which indicated that weighted blankets successfully decreased distress and visible signs of anxiety.

More Than Just Insomnia And Anxiety!

Depression, anxiety, aggression, OCD, PTSD, and bi-polar disorder have all been linked to low serotonin levels in the brain, which weighted blankets are reported to assist with. In addition, people battling with depression, mania, anxiety, trauma, and paranoia, or undergoing detoxification have reported relief from symptoms.

Weighted blankets have reportedly helped patients suffering from a lot of different diseases and disorders, from autism, to Tourette’s, Alzheimer’s Disease, Cerebral Palsy, Restless Leg Syndrome, and even can help alleviate menopausal symptoms!

Using Weighted Blankets

The weight of the blanket will depend on your size and personal preference, but the typical weight for adults is around 15 to 30 pounds in the blanket. Experts recommend seeking the guidance of a doctor or occupational therapist if you have a medical condition. Do not use weighted blankets if you are currently suffering from a respiratory, circulatory, or temperature regulation problem, or are recuperating post surgery.

Where To Buy?

There are many website where you can purchase a weighted blanket in tons of choices of fabric and weight, or you can even make your own! There are specifically blanket shops, such as Magic Blanket, created by product developer, Keith Zivalich in California, which have children’s blankets that are 36 inches wide, and adult blankets, which run 42 inches across. Another good option is Mosaic Weighted Blankets which sells all-cotton versions. Amazon, Etsy and Ebay all sell them, and therapy and special needs stores like National Autism Resources also sells them. You can find them in a variety of sizes, colours, and fabrics, and this is one simple change that can make a HUGE difference in your life!

 http://www.lifehack.org/351993/sleeping-with-weighted-blankets-helps-insomnia-and-anxiety-study-finds?dgs=1

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Medical Miracles

A Less Risky Anesthesia for Babies

November 2014

For millions of infants and toddlers who get surgery every year, mounting concern about the risk of general anesthesia is leading more hospitals to consider an alternative: spinal anesthesia which leaves babies awake, immobilized and pain-free.

The spinal approach has been shown to have fewer breathing complications, quicker recoveries, and faster feeding, which enables families to take babies home sooner. It is used primarily for surgeries that last an hour and a half or less, and take place generally in the abdominal area and lower extremities.

Spinal anesthesia for infants was pioneered by the University of Vermont Children’s Hospital in Burlington, Vt., four decades ago, but it never caught on widely. Many surgeons and anesthesiologists were reluctant to change traditional practices, or deal with babies that might squirm or fuss during a procedure. But in recent years animal studies have increasingly shown that exposure to anesthetics can cause memory loss, learning difficulties and other harmful changes in developing brains of young lab rats and monkeys, so researchers have begun to tackle the question of whether the same risks apply to children.

Anesthesiologist Robert Williams with infant Mira Barr at the University of Vermont Children's Hospital in Burlington, Vt.
Anesthesiologist Robert Williams with infant Mira Barr at the University of Vermont Children’s Hospital in Burlington, Vt. Photo: University of Vermont Children’s

Hospitals around the world are now participating in multiple studies to determine whether exposure to anesthesia is associated with cognitive problems later on. The largest of those, known as the GAS study, includes 28 hospitals in the U.S., Canada, Europe, Australia and New Zealand, and aims to measure intelligence at age 5 in 722 infants randomized to receive either general or spinal anesthesia for hernia repair surgeries.

An interim analysis, published on-line in October in the Lancet, found no difference in cognitive function at two years of age, which suggests a single short-duration exposure to general anesthesia may not be harmful. But lead investigator Andrew Davidson, medical director of the clinical trial center at Murdoch Children’s Research Institute in Melbourne, Australia, says that until the study has completed its evaluation of children at age 5, in 2017, there can be no definitive answer as “some aspects of neurodevelopment cannot be assessed at two years of age.”

To Watch the Video that came with this amazing story and read more click on the link in RED

http://www.wsj.com/articles/a-less-risky-anesthesia-for-babies-1449514284

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THE BIRTH OF TPN

by the Doctor below, Please watch this video learn how the TPN method was BORN. If it wasn’t for the drive to find a way to keep our Children alive by finding a way of feeding though the vain then your child or mine would not be here today, I for one am very grateful he never gave up, reason for me my own Daughter was the First in the world two years ago to be feed by TPN, why the first you may ask, it took 11 world consultants, 3 were in the USA to work out how this could be done on a child with a very rare metabolic condition, and they cracked it, but if it wasn’t for this Dr below then god only knows what the out come would of been. if you wont to know how it came about then watch the video I have below.

Stanley J. Dudrick, MD, FACS, FACN           THANK YOU SIR

www.youtube.com/watch?v=0O-qoGPiLP4?rel=0

wn.com/stanley_dudrick,_st._marys_&_yale_university_on_advocare

Stanley Dudrick, MD, FACS, Professor of Surgery at The Commonwealth Medical College (TCMC) was honored as a “Living Legend” by The International Society of Small Bowel Transplantation on June 12, 2015 at its annual conference in Buenos Aries, Argentina. Known as “the father of intravenous feeding,” Dr. Dudrick pioneered total parenteral nutrition (TPN) in the early 1960’s. Originally from Nanticoke, PA, he was the first physician to successfully feed people through an I.V., totally bypassing the normal digestive system. Prior to TPN, patients who could not eat or digest food routinely died of starvation. Today, more than 10 million premature babies and 20 million adults owe their lives to Dr. Dudrick’s brilliant invention.

The International Society of Small Bowel Transplantation annually selects recipients as Living Legends to commemorate distinguished careers that have impacted health care through notable contributions to transplantation, research, and education.

Dr. Dudrick explained, “TPN is a lifesaver for patients with short bowel syndrome. They have to be fed by vein or else they die. Some of these patients have a bowel transplant. TPN keeps the patients alive while they’re waiting for transplants. Then TPN will feed the patient until the new bowel sustains the patient, and it serves as a safety net in case the transplant doesn’t work.”

Dr. Dudrick has received numerous accolades for his work. In Skawina, Poland, the Stanley Dudrick, MD Memorial Hospital stands in his honor. Last summer, Dr. Dudrick was named a “Hero of American Surgery” by the American College of Surgeons.

William F. Iobst, MD, Vice Dean and Vice President of Academic Affairs at TCMC, said, “Dr. Dudrick deserves the title ‘living legend.’ TPN is considered one of the three most important medical advances of the last century. We are incredibly proud to have him on the faculty at TCMC, and fortunate he has returned to his home community.”

 

TWO YEAR OLD GIRL gets Windpipe made From Stem Cells

www.news.com.au/lifestyle/girl-2-gets-windpipe-made-from-stem-cells/story-fneszs56-1226632713207

Tracheomalacia in Children

www.childrenshospital.org/conditions-and-treatments/conditions/tracheomalacia

Sonoma Academy student’s guest at school: Surgeon who operated on him as newborn

www.pressdemocrat.com/news/2214835-181/sonoma-academy-students-guest-at

Surgery to Save Baby Born with Esophageal Defect       INCLUDING VIDEO

www.thedoctorstv.com/articles/2887-surgery-to-save-baby-born-with-esophageal-defect

Deaths: Harberg, 74, innovative paediatric surgeon

www.chron.com/news/houston-texas/article/Deaths-Harberg-74-innovative-pediatric-surgeon-2132427.php

Meet Ryan: The boy who grew his own esophagus   (Posted 17th July 2015)

http://thriving.childrenshospital.org/meet-ryan-boy-grew-esophagus/

The 6 Stages of Grief I Experienced as a Special Needs Mom

http://themighty.com/2015/07/the-6-stages-of-grief-i-experienced-as-a-special-needs-mom/

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Six Life Lessons From the NICU

 

 

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