My Child was Born unable to swallow
Children’s Storys told by those that love them,
all have their own story to tell.
Little Molly Cranston’s 2018
Little Molly Cranston’s family face an agonising few months as they wait to find out if their baby will be able to eat normally.
Three-and-a-half-month-old Molly was born with a rare condition where her food pipe was sealed up at the bottom.
Without treatment, anything she drank would cause her to choke because it would go down her trachea, or windpipe, which was incorrectly connected to her stomach.
The condition, called oesophageal atresia (OA), only affects one in about 4500 babies.
Mum Melissa, a hairdresser, admitted she had never heard of it when doctors gave her the devastating diagnosis.
“I was a little bit older, 34, and I thought ‘has my age got something to do with it?” she told nine.com.au.
“But it’s just one of those things that happen and there’s nothing you can do about it.”
Melissa and husband Mark, a commercial fisherman, were allowed just a few seconds with the newborn at Westmead Hospital when she was born just after Christmas before she was rushed away by medics.
Very long Story click the link to read on.
South Africa
November 29, 2015, Shelton was born at 7:45 am, in Pretoria, South Africa weighing 2,8kg.l cannot say the pregnancy was a difficult one because all the stuff l went through with this pregnancy was the same as for my first pregnancy.lmmediately after delivery the nurses noticed he was not breathing well and he had a lot of phlegm. He was immediately put on oxygen. A few minutes later they brought him to me so l could try to breastfeed him but he kept choking and started turning blue. They put him back on oxygen and we were transferred to our local hospital. When we arrived at the hospital he was taken to the NICU ward and l was taken to the labor ward.l was not allowed to go and see him for the first two days. Those two days were the longest, not knowing what was going on with my baby. Nobody came to give updates to parents who were not in a position to see their babies. On the third day, l was allowed to go and see him.l never realized there were so many sick babies in this world until that moment when l entered the NICU ward it was the most intense moment for me.l found Shelton asleep, tired and his face was swollen and he was still on oxygen. The doctor came in and told me that from the x-rays taken when he arrived, it showed there was a connection between his food pipe and wind pipe but they were also not sure about the extent of what was going on and they would only know for sure when they took him to the theater for surgery. He then told me about other conditions that usually accompany this condition VACTERL and CHARGE.
The next weeks that followed were the most difficult for me emotionally. One day he looked stronger the next day so weak
sometimes it looked as though he was giving up on life. He didn’t have much of a voice so when he cried the nurses couldn’t hear him. They mostly saw he was crying when he was red and the area around his lips turning blue. Many times l found him like this because they didn’t hear him cry. This really broke my heart but nothing could be done about it. Visiting time was every 3 hours and for an hour. Only mothers are allowed to visit for that long, family members even dads its only 15minutes. l became like a zombie because l was sleep deprived, every 3hours l went to see him and express milk that l would throw out because he wasn’t getting anything orally or via the NG tube.l was amongst the fortunate moms who were allowed to pick up their babies from day 1. I sang for him and told him to fight because a lot of people at home were waiting for him. I told him funny stories about his brother and all that they would do when he got better. l even told him not to relax but to fight because this wasn’t home. l told him everything that was waiting for him at home. He fought l can tell you that.
sometimes it looked as though he was giving up on life. He didn’t have much of a voice so when he cried the nurses couldn’t hear him. They mostly saw he was crying when he was red and the area around his lips turning blue. Many times l found him like this because they didn’t hear him cry. This really broke my heart but nothing could be done about it. Visiting time was every 3 hours and for an hour. Only mothers are allowed to visit for that long, family members even dads its only 15minutes. l became like a zombie because l was sleep deprived, every 3hours l went to see him and express milk that l would throw out because he wasn’t getting anything orally or via the NG tube.l was amongst the fortunate moms who were allowed to pick up their babies from day 1. I sang for him and told him to fight because a lot of people at home were waiting for him. I told him funny stories about his brother and all that they would do when he got better. l even told him not to relax but to fight because this wasn’t home. l told him everything that was waiting for him at home. He fought l can tell you that.
Days moved by slowly he started to lose weight. We tried to give breast milk via the NG tube but he didn’t digest any of it, so after a few days of trying the doctor stopped it. The reason why he was unable to digest was never looked into. After 3 weeks he was now at 2,6kg. Nobody thought much of it, little did we know that the struggle to get him to put on weight was going to be a future challenge. One day during visiting time l found he had pulled out his NG tube, the doctors didn’t put it back in since he was not using it. The next day he kept pulling out the oxygen tubes. The nurses kept putting them back in and he kept pulling it out. Finally, the doctor gave the go ahead and he was removed from the oxygen.3days later we were discharged from hospital a week before.They have worked with Shelton since l can remember, wonderful people.
Shelton kept getting ear infections. The ENT doctors kept giving us ear drops to clear his ear canal and antibiotics.
Those didn’t help at ln July our audiologist set-up a meeting with one ENT doctor, Doctor Els who works hand-in-hand with the audiologists. Dr. Els was the first ENT doctor who wanted to take a look at the inside of Shelton’s ear after he couldn’t see the whole ear canal because it was full of ear wax. He sent us to get a CT Scan for his ears. The Ct Scan suggested that he had normal outer and inner ears but some of the middle ears were not visible because his ears were not draining properly. He also informed us that Shelton’s ear canals where so tiny and there are high chances his hearing issues are because he is not getting enough sound in because of the ear wax. He also wanted to go into the ear with a scope to see the extent of what was happening in the ear but unfortunately, the hospital does not have the scope of the size he needs. He discharged us and told us to come back if any issues arise or at 6 or 7 years so that he could take a look again to see if the ear canal has gotten any bigger and for another CT scan. We continued with the audiologist, an ABR test was done which always came back inconclusive because Shelton was a restless sleeper and the audiologist was very reluctant about giving anesthetic. When he turned one the audiologist booked him for another ABR and this time he was going to be under anesthetic. That was a big relief for me because l had gone through the most frustrating 3 hours in the booth,3 times, to only come out and be told the results where inconclusive because he kept waking up. He was diagnosed with the Conductive hearing loss (CHL)and Sensorineural hearing loss(SNHL)
Those didn’t help at ln July our audiologist set-up a meeting with one ENT doctor, Doctor Els who works hand-in-hand with the audiologists. Dr. Els was the first ENT doctor who wanted to take a look at the inside of Shelton’s ear after he couldn’t see the whole ear canal because it was full of ear wax. He sent us to get a CT Scan for his ears. The Ct Scan suggested that he had normal outer and inner ears but some of the middle ears were not visible because his ears were not draining properly. He also informed us that Shelton’s ear canals where so tiny and there are high chances his hearing issues are because he is not getting enough sound in because of the ear wax. He also wanted to go into the ear with a scope to see the extent of what was happening in the ear but unfortunately, the hospital does not have the scope of the size he needs. He discharged us and told us to come back if any issues arise or at 6 or 7 years so that he could take a look again to see if the ear canal has gotten any bigger and for another CT scan. We continued with the audiologist, an ABR test was done which always came back inconclusive because Shelton was a restless sleeper and the audiologist was very reluctant about giving anesthetic. When he turned one the audiologist booked him for another ABR and this time he was going to be under anesthetic. That was a big relief for me because l had gone through the most frustrating 3 hours in the booth,3 times, to only come out and be told the results where inconclusive because he kept waking up. He was diagnosed with the Conductive hearing loss (CHL)and Sensorineural hearing loss(SNHL)
He was given a BAHA(born anchored hearing aid) to assist with hearing. Till this day he continues to go for hearing tests to see if anything is improving.
The speech part of things is still very delayed 2yrs 5months his still doing baby talk. He hasn’t said mama or dada yet. we wait in anticipation for that day. There hasn’t been a genetic diagnosis because it really takes long to get the genetic testing finished because of the backlog at the government lab which does genetic testing. It took us more than 6months just to be told there was nothing wrong with his chromosomes.lts really frustrating not knowing.l know that knowing the genetic condition might not change anything but it could help me to know how or what he needs in the future.lt is still going to be a long wait before we can know, with only one government lab for all government-run hospitals in South Africa which does genetic testing. We still go to see the genetics doctor every 6months. She thinks its either Golden Har or Treacher Collins Syndrome. In June 2018 we go again to get blood drawn to check chromosome breakdown and the results will probably come back February or March 2019 that’s if the bloods don’t get lost.
He was also checked for a cleft palate and tracheomalacia. There was no cleft palate but was diagnosed with mild tracheomalacia which didn’t require surgery. He has continued to struggle with weight gain and maintaining it even with the g-tube. He is now 29months and weighs 6,5kg and at a height of 71cm. He has weighed between 6 and 6,5kg for
about 6months now. The doctor has recently referred us to see a gastroenterologist.
Through all this l have met some wonderful people from all over the world, made friends.
This is Shelton’s story. He is our hero.l am just his cheerleader, cheering him on with each encounter. We love him. He has brought out of me a strength l never knew l had and a faith l never thought l had. Thank you to everyone who has supported us through the most trying times, emotionally and helped financially. We love you and may God bless you and increase from where you took from to help us.
A big thank you to the Caylum Willemse Foundation who have and still assist with Shelton’s medical bills and medications. Please assist them with funds for them to continue helping Shelton.
He still needs to see a gastroenterologist and for future procedures that he may require.
Shelton’ Story continues on facebook
