Virginia’s Biography Born Unable to Swallow Ea-Tef

Virginia was known to her family and friends as Ginni

This Tribute was written by the Mother and Father of a Lady known as ‘Ginni’

It has taken Ginni’s Mother a few years to find the strength to look at the notes she kept of her Daughters’ Medical records, and write Ginni’s story for this website.

(Steve Wyles) On receiving this email and reading this first, before adding it here, one thing came into my head, this was one strong lady, and one I would have liked to have known.

Virginia’s Biography Born Unable to Swallow Ea-Tef

Wayne and I fell in love at BYU.

While struggling with concert piano, I became in the family way.  I was very sick and could only eat crackers and juice.  Wayne was so precious to me.

I went to the doctor for my seventh-month checkup.  I was just barely over 100 pounds but my stomach was quite large.  As Dr. Brasher checked me, I felt warm water whooshing out.  He opened his top drawer which filled fast, then the second and finally the third. Next, the nurses were running to get towels for the carpet and into the hallway.  Knowing nothing about childbirth, I thought this was normal.

[When the body senses something wrong with the baby, it tries to get rid of it by filling the uterus with liquid and forcing the baby out.]

We have been asked to add this bit in here in case any New Parents from 2021 think this is still what happens

(Just in case there are any new EA/TEF Moms or family members reading this who are unaware, this sentence In brackets above, is NOT MEDICALLY ACCURATE. Perhaps this used to be believed in 1968, but it is completely untrue. Please do NOT think that your body was trying to fill up and push out your baby “because something was wrong with them.” What this sweet Mama is describing Polyhydramnios.. (excess amniotic fluid). For a lot of our babies, this occurs because they are unable to swallow and process amniotic fluid like typical babies in the womb, and a build-up of fluid occurs. It is safe for them in the womb, but sometimes causes complications with delivery.

There are a couple of other medically inaccurate statements in this story, so please know that it is a Mama describing her personal journey from a time in which the medical field knew far less about this condition and pregnancy in general)

Wayne’s aunts were giving me a baby shower that night.  The doctor gave me permission to go as long as Wayne carried me in and I laid flat on the couch.  After a while my uterus started to have muscle cramps, so off to West Valley Hospital we went.  I squeezed Wayne’s hand as he read to me.  At the worst part of the pain, it disappeared and I told Wayne I had to go to the bathroom.  He went and found a nurse.  She was fussing about new mothers and what they didn’t know.  Then she threw back the sheet, had a startled look, and hit a red panic button.  Virginia was crowning.

Why they wasted time taking me to the delivery room I’ll never know.  I remember a huge fly was buzzing around.  Dr. Brasher turned the lights off for a minute but it didn’t leave.  And there she was – four pounds 14 ounces of the most beautiful baby.  She was so tiny that she wasn’t even red from squeezing out.  Dr. Brasher had done an episiotomy which was quite unnecessary, so the nurses took my baby while I had stitches put in.

I think they let me see her through the glass of the nursery.  Finally, I was told that when they tried to give her formula, it would simply run right up and out.  Next, I was told they were sending Virginia by ambulance to the University of Utah Medical Center to see what was wrong. [There were no medical helicopters that I knew of then.]

Dr. Dale Johnson, head of surgery for babies, had just come back from a medical conference.  One of the lectures he went to was taught by an autopsy specialist who said that he had noticed over and over that when a baby had an extra bone in the back (without its matching bone on the other side) he had noticed the babies frequently had a trachea esophageal fistula of some sort.  He immediately took her into surgery.  This is difficult for me to describe.

Down her mouth to the esophagus was what seemed to be a test tube ending.  The esophagus came from her stomach over and connected to the top of the bronchial tubes where they divide to go into each lung.  Thank God she was premature because if she had to spit up from the stomach it would have gone straight into the lungs and that would have meant immediate death.

Dr. Johnson was going to do the operation in two steps.  But when he cut the esophagus off the breathing tubes, he tried to line it up with the esophagus coming from the mouth to a test tube ending.  It fit perfectly.  He sewed everything up and sent her to the NICU.  She was the largest baby in there.

A couple next to me remarked to each other how big Virginia looked and what in the world could be wrong with her.

And here is the kicker.  We were using Wayne’s father’s camera.  It turned out that the camera was broken and the film had absolutely nothing on it, so we have no pictures of that time.

I am going to use Virginia’s nickname – Ginni

I am going to use Virginia’s nickname – Ginni – because that is what I always called her.  My first college roommate was in the Summer of 1968 and her name was Ginni Reese.  During the first week, she walked in on me sitting on the floor with my head between my knees, crying uncontrollably.  I can’t remember anyone comforting me like this, but she sat down next to me on the floor and actually held me and let me cry.  After a long time, we began talking.  That was the last homesickness I ever had.  I loved her like the sister I always wanted.  We did most things together.  The lunchroom was about half a mile (maybe a little less) from us.  She helped me go and eat even if I didn’t want to.  We began making friends, thanks to her.  I often remark that when I went to Northwestern I felt like I had just been born.

I knew I had to name my baby after the Hadleys of Virginia, my ancestors.  So I named my baby Virginia Hadley, and immediately called her “Ginni.”  Of course, I lost touch with this angel through the course of events.

Ginni’s isolette was in the back in the left corner at first.  At that time I was told that babies feel no pain.  So her nurse would come and slap Ginni’s feet to “stimulate” her (Ginni would cry so hard and so would I).  I was so very mad but felt helpless.  Next, the nurse would have Wayne slap Ginni’s feet, AND the nurse began openly flirting with Wayne.  I thought about how little girls spend their lives looking forward to their wedding day.

Then the wording is “happily ever after.”  I was so scared and so young.  I felt that if I left Ginni, even just to eat in the cafeteria, they would kill her.  Oh, what I would have given to have my grandmother Mom there, and to have had a McDonald’s house to sleep and clean up in.

Ginni would occasionally stop breathing.  A nurse would put a tube down her throat that sucked all the mucous out.  Then she would be pink and pretty.  They had used the top of her head for the IV (I also remember them using the navel for it) so Ginni’s head was shaved, what little hair she had.  I don’t think the whole head was shaved because I remember it looking funny.  Later on, I kept a bonnet on her almost all the time.  One of Wayne’s uncles said something funny about her bonnet.  I was so emotional that I secretly hated this man throughout his life.  It turned out finally that I had the wrong uncle!

One day in the NICU, I noticed blood spurt up the wall at the other end of the room.  Doctors and nurses were working on a baby.  I turned my back.  Then there was a baby in my vision that some mother had tried to abort herself – but he wouldn’t die.  She finally called 911 and this baby was frequently next to Ginni.  When we came back when Ginni was six months, he had pneumonia.  I saw him resuscitated over and over.  When the alarm would go off, he would have a sweet smile on his bluish face.  When he came back to life, he was mad.  Finally, he went to Jesus.  The entire NBICU closed up in sorrow.  I couldn’t understand why I had to leave at first.  I’m sure my mind was not working clearly.  It was a sad day.

As we were going home with Virginia, a nurse rudely asked, “Are you taking her home with you?  Why?”  Then a doctor who was studying to be a doctor asked us if we had our appointment for the spinal doctor.  I looked at Wayne who looked blank.  Then I asked why we would need it.  He said Ginni had a horrible birth defect and if we didn’t bring her in for appointments she would be horribly deformed.  I took a deep breath and then nearly fainted.  No one had told me about this – a hemivertebra.

Virginia’s Biography Born Unable to Swallow Ea-Tef

When we got to our Wymount Terrace apartment, I pulled up her “por-ta-crib and laid her down to do dishes.  There was that horrible sound and I looked over to see her completely blue.  I screamed at Wayne.  He came and did mouth to mouth and brought her back.  At that moment I realized Virginia’s life was entirely up to us.

When I called the hospital, they said sweetly, “Oh, she really didn’t turn blue did she?”  I was confused and angry.  I turned to Wayne and said, “We’re on our own.”  And so we were.  Ginni wasn’t out of the sight of one of us.  Luckily most of our classes did not overlap.  Only once did – my English class and Wayne’s Scouting class.  My professor said absolutely not.  Wayne’s class welcomed Ginni and were anxious to help if something happened.  “Where there is a will, there is a way,” ‘George Herbert’

Ginni’s strider continued and we had to hold her upright constantly to keep her breathing.  Wayne sat up the most at night since I tended to fall asleep after practicing for my “Concert Piano” degree [six to eight hours a day].  We had bought an ugly rocking chair from Deseret Industries, and it proved to be essential to sleeping in, keeping Ginni upright.  I have never found an equal.  So that is how we lived.

However, in December of Ginni’s birth year (1972) we tried propping her in the new plastic seat I had found.  We stacked blankets and pillows to make sure she didn’t slip down.  We were talking when we heard the familiar strider.  Sure enough, she had slipped down to her back.  Wayne resuscitated her, and in hysterics, I called the hospital.  In that sugary voice nurses use, she convinced me yet again that I was calling without a reason.  Exactly a week later, we propped Ginni in the same manner, but better.  The exact thing happened again.  I called the hospital and when I heard the sugary voice, I collapsed to the floor underneath the telephone, hysterical.  Wayne took the phone and said something and Dr. Johnson came on the line.  He said he would look at her but he never wanted to see us again.

Off to Salt Lake City from our Provo apartment we went.  An angry Dr. Johnson met us and took her from me.

I was crying and begging him not to put her down, but he dashed into a “do not enter” door, and there we were with our teeth in our mouths.  In approximately two minutes the emergency alarm sounded.  I knew he had put her down.  I continued to cry and pray, until,  finally, Dr. Johnson came out ashen-faced.  He proceeded to tell us that if we had not done all that we did, she would be dead.  He then said that he had “forgotten” she had no valve on her stomach – at all.  When she laid down, the stomach contents just followed the flow towards her mouth.  This hit the bronchial tubes and caused the spasm that stopped her from breathing.  He was a member of the Mormon Tabernacle Choir which then we thought very highly of, so what he said next hit me in the heart.  He asked if we could forgive him.  And we did, on the spot.

The following surgery was called “Pyloroplasty Gastric Suspension, described as “Borema-Type Gastropexy [sic]”.  It was described to us as the stomach being sewn to the abdomen to keep it from feeding up into the thoracic area.  It was done at the University of Utah Medical Center and we could only sleep on the bare floor of the snack room, with other parents.  We were always awakened at dawn by a custodian hitting our feet with the vacuum cleaner, which made an awful Christmas.

Virginia’s Biography Born Unable to Swallow Ea-Tef

We went home on December 26, 1972.

For several weeks we dealt with a “gastrostomy tube,” as I wrote in her baby book.  It was one of the few times Ginni was not in constant pain.  We rather regretted its removal since we could feed her in the tube and then  “burp” her by moving her around, all without arousing her from sleep.  Within a week of the tube being removed, Ginni began again encountering strider and resuscitation on an hourly basis.

Ginni at her Parents Graduation.


Finally, Dr. Johnson scheduled another surgery in March 1973 called Anterior Bracheo Cephalic Arterial Suspension.

We were told an artery that went to half of Ginni’s brain was directly over the area of the original TE Fistula surgery.  In an attempt to stop the now-familiar chain of events, the artery was “stapled” to her sternum.  I wrote in her baby book that it was the “anterior subclavian artery.”  Years later Dr. Johnson said I made that name up.  Now, where would I get the name and why would I have immediately written it in her baby book I took everywhere?  I let the insult pass, as usual.  He then said it was the “innominate” artery.  I was corrected every time I tried to say it right, so I gave up and, acting stupid, would say “some” artery.

Backing up to going home from Ginni’s initial TE Fistula surgery, we were told suddenly that Ginni had a “Dorsal Vertebral Anomaly” and she would become terribly malformed in her back.  That’s when I nearly fainted, both Wayne and I hearing it for the first time.  His answer to my frightened query of what was wrong with her, was, “We told you this the night she was brought in – where the hell were you?”  My reply, of course, was that the doctor wouldn’t let me travel from my hospital bed where I had given birth six hours before.  No apologies from him – just a disgusted look as I tried to avoid fainting.

Appointments were kept.  In the baby book, we wrote “Hemi-Vertebrae.”  This horrible thing that was supposed to result from the extra OR missing piece of vertebrae [I was always told both ways, seemingly just to confuse me] just never grew.  God blessed us once again.  We dodged a bullet there.

1994 April 21:

Wayne graduated from Brigham Young University with a BS degree in Youth Leadership and Recreational Management.  I graduated with a BA degree in what was then called Concert Piano, and also English.  We had never left Ginni’s side so we decided to take her with us.  We used our scant money of $25 to have an exact gown like ours made.  The Music Department donated a cap and pink tassel.  That day was the happiest of my life.  My parents and Aunt Ora were there.  Ginni had a good day.  We took her right into the new Marriot Center and down many steps to our seats.  I was eight months in the family way with Melanie.  So every step out we took, the entire rows on either side gave us a standing ovation.  Many people kept taking pictures of us until we had to leave.

Time passed with a sense of normality – this odd life accepted as Status Quo.  Ginni turned out to have learning difficulties.  Her initial assessment when we took her home was that she would stay at the mental age of five and would have serious learning difficulties, besides being sterile from the x-rays performed to save her life.  I decided not to tell her of her birth defects nor of the diagnoses.  Instead, I encouraged her to study harder.  She had strider and serious breathing episodes, which she handled herself.  She also had a distinctive “bark” when she coughed to get the phlegm up.

One odd incident came about when we moved to Idaho Falls for a year for my husband’s Professional Scouting job.  Ginni had gone with us always and never out of our sight.  That included Scout camps that my husband managed [including Camp Kiesel, Camp Bartlett, and Treasure Mountain].

Virginia’s Biography Born Unable to Swallow Ea-Tef

And yet, one day I was called to her grade school to meet with the principal.  It turned out to be several members of the school board accusing me of child abuse and probably keeping her in a closet.  I had no idea the meeting was with anyone but the principal.  I thought he wanted to know why she sounded like a “duck” as she coughed and fought for breath, so I didn’t warn my husband.  My mind is a blank for most of this, but my husband remembers taking her to Primary Children’s Hospital, back to Dr. Johnson.

Then we went to see an audio/ear specialist at the Salt Lake Clinic – that I remember.  She had an inordinate amount of ear wax in her ears for her young age.  Dr. Perkins cleaned it out without a cry from Ginni.  I never heard anything else from school.  End of that story.  And another escape from a bullet.

When Ginni was about eight years old, we decided to visit Timpanogos Cave in Provo, UT.

Ginni was fine until we started down the mountain.  Suddenly Ginni was coughing and breathing hard and was very mixed up in what she said.  In the car she became normal but it was off to Primary Children’s Hospital once again.  She seemed fine to everyone so we thought the cave ascent was too strenuous on her.


Ginni came home from Bear River Middle School in Garland – we had moved back – and that day had her first experience with PE.  The showering was awful, but even worse were the comments about what the scars were on her body.  I had to sit down and tell her about the TE Fistula and subsequent surgeries.  I even told her about her “bark.”  She was amazed that I had never told her or that she had never noticed the scars.  I answered that there was no need for her to know until this particular day.

In Bear River High School, Ginni wanted to play the oboe.  I knew it took more air than any instrument I was familiar with.  When Wayne said he did not want a “dying duck” sound around, my mind was made up.  I went that week and rented an oboe.  The sound was atrocious, of course, but she got better and better.  I even sent her to private lessons for the double-reed difficulties.  She would get very winded and then would try all the harder, with my encouragement.  Building muscles is what this life is all about.

1990 Autumn:

At 18 years of age, Ginni described what happened to her at school.  “Suddenly I couldn’t breathe, and my face turned red with a burning sensation throughout my face that continued nearly down to my throat, but more in my head.”  She tried to grab water and drink.  She also said sometimes it felt like it moved something like maybe something was lodged.  Effects would last for up to half an hour.

Extreme exhaustion followed.  Back to Primary Children’s, we went, to see Dr. Dale Johnson again.  We had given him gray hair.  He took her into surgery thinking he would have to build a “cage-type” affair, either inside or outside the trachea to stop the “malacia.”  He had consulted a specialist in Canada and also one in Australia for advice.  Yet, when he operated he found that her heart had changed position and that the Aorta coming out of the heart was lying right on top of the original surgery from 1973.  He then sutured the heart to the sternum and said any future open-heart surgery through the sternum would kill her instantly.  [Remember this when you read of her death at 45 years of age.]  She was in the hospital for three weeks, and Dr. Johnson didn’t believe us when we said she played the oboe – but she reassured him she did.

Virginia’s Biography Born Unable to Swallow Ea-Tef

Ginni married the year after that surgery [Anterior Aortic Suspension] at 19 years of age.


She continued experiencing worsening symptoms and would have to drink a lot of water to get any food down.  Finally, in November 1991, a “Flexible Fiberoptic Bronchoscopy” was performed with the patient awake for evaluation of symptoms of “dyspnea.”  The major findings were that the right “anterio-lateral compression of the trachea at the thoracic inlet” was collapsed to approximately 25% of normal diameter with “expiration,” and left anterio-lateral compression of the distal trachea,” which was felt to be less severe than above.  No surgery was involved.

In 1992:

The very next year, Ginni was nearly 20 years of age and began itching on her feet constantly.  This spread to Ginni’s lower legs over a year and the itching there was intermittent.

1992 June:

I have to turn to the doctor’s notes.  “Ms. Hunsaker had worsening of her chronic dyspnea.  At that time an exploratory thoracotomy was performed and the aortic arch was suspended to the sternum. There was no mention of the malacia at the thoracic inlet.”

1992 October:

“The patient was seen in follow-up and felt to have some symptomatic improvement.  Spirometry at that time revealed FEV1 2.5/FVC 3.0 (83%).  These results were apparently ‘modestly improved’ from pre-operative values.”

1994 October:

At 22 years of age, the itching began spreading to her entire body.  It was fairly consistent but seemed much worse at night, attributed to increased awareness.  She could not visit us without taking off her shoes and socks and scratching her feet hard!


Ginni called Dr. Johnson and told him she was having constant burning in her esophagus and life had deteriorated to an alarming degree, notably both with eating and with the constant itching.  She asked him what could be done.  He referred her to a Dr. Hillam in Brigham City, a gastroenterologist, and surgeon in typical small-town private practice.  He prescribed Prilosec twice a day.

Then Ginni’s symptoms became critical.

She could feel “material” coming up into her throat, choking her and cutting off her breathing.  She would burn in her chest now, and it created pressure in her chest and exquisite pain.  Her husband, Jeff, reported cessation of breathing for long periods during the night, keeping HIM in a state of fear.  Each morning there was evidence of aspiration.

Dr. Hillam did a scope of her esophagus which showed tissue changes and made him worry about Barrett’s Syndrome.  Once inside, he found the stomach had 1/10th the acidity of a normal stomach, so he insisted on doing a partial wrap of the esophagus.  He also saw sclerosing in the liver and wrote he did not understand the significance of it.  The surgery was done and Jeff did a wonderful job taking care of her.

1995 Summer:

Ginni began waking up during the night feeling like she had breathed in something, and would be choking and gasping for air.  She would run to the sink for water and would have vomited, but she could not.  She never vomited normally anyway, just had saliva come up with no food.  She would wretch, choke, and fight to breathe to remain conscious.  The acceptance of these critical symptoms as “normal” brought back the feeling of us against the world, with us MAKING her live.  Jeff had become more and more aware of the seriousness of Ginni’s health.

Virginia’s Biography Born Unable to Swallow Ea-Tef

Next came allergy testing, sent to Washington, D.C.  She was allergic to all known food groups.  Within the next two months, she experienced numbness in her entire body.  Then the numbness came with severe stinging.  Serious breathing episodes occurred where she used an inhaler to avoid the emergency room upon the suggestion of our family doctor, Dr. David Wilding.  I wrote, “We simply had to accept crises as normal and deal with them ourselves.  Why??”


Surgery was scheduled with Dr. Hillam for December 1 to undo the partial wrap, cut away 2/3rds of the stomach to create a funnel situation into the intestines that would be brought up and looped.  This would create a new opening for the bile far below the stomach area.  I was very wary of permanently changing her stomach.

I reached out on the internet for help.  Gregg Burke was in charge of the TEF Database.  He gave us names of doctors including their personal physician in L.A., Dr. Kathryn Anderson.  We also received the names of Dr. Keith Ashcraft of Children’s Mercy Hospital in Kansas, Dr. Arnold Coran in Michigan, and Dr. Harry Hendron of Boston.  Next, Dr. Keith Ashcraft referred us to Dr. Paul Hyman in California.  He recommended the following two doctors:  Dr. Edward Feldman and Dr. John Vierling, a liver specialist in Beverly Hills, CA.  Ginni called Dr. Feldman and he was rude to her but gave her a reference to Dr. Andrew Ippoliti in Beverly Hills, CA.  It seemed like keeping Ginni alive was like the first day we brought her home – entirely in our hands.

Ginni came to my home crying.

She wanted to go to Dr. Vierling’s office [at Cedars-Sinai Hospital in California].  He had said, yes, the wrap needed to come down but she needed immediate evaluation of her liver.  He said that her bile ducts may be blocked or narrowed which would block up bile and cause itching [Colostasis].  The first thing to be done would be a “cholangiogram,” a specialized x-ray of the area, looking closely at the bile ducts.

1997 December 7:

After two more phone calls to doctors, we called Gregg Burke in Maryland.  Some of his ideas to try were to cut out milk, fruits, and bread and to start eating rice.  Concerning Ginni’s breath, he said she could have a “pouch” with food hanging up.  It could be in her throat or even her esophagus and perhaps in the stomach.  He suggested that good resources to talk to were Dr. Dave Merkin of Maryland for nutrition and Dr. Hardy Hendrin in Boston [who would soon be forced into retirement].

In one set of notes I have found from the University of Utah Pulmonary Clinic, I am amazed at the wording.  I will type them in here word for word.

Virginia’s Biography Born Unable to Swallow Ea-Tef


This patient is a very complicated 24 year old female referred for evaluation of dyspnea and tracheomalacia.  She has persistent esophageal and tracheal problems as complications of congenital esophageal atresia and TEF.  Trying to sort this out in terms of individual problems:

  • Her severe spell of worsened dyspnea two weeks ago was likely the results of a major aspiration episode while asleep. This undoubtedly gave her worsened tracheitis, bronchitis, and possibly pneumonitis.  She improved significantly with “asthma-type” therapy including beta-agonists, steroids, and antibiotics.
  • A major concern is that she has chronic aspiration that causes recurrent tracheitis and bronchitis. This also makes her at high risk for aspiration pneumonitis and pneumonia.  Regurgitation of esophageal fluid into the pharynx was seen at bronchoscopy and she wakes up at night with symptoms suggesting aspiration.  Thus, her esophageal disease is the most threatening of her problems right now.  This is very complicated in that she has both peristalsis and possibly obstruction from the partial fundoplication.  In the end, we need to facilitate emptying of the esophagus and clearing of the pharynx so that she does not aspirate.  I will speak with Dr. Hillam and have Dr. Ashworth see her in the clinic to consider a further evaluation of her esophagus (esophagram, motility study, pH probe. Other).  We need to consider medical (eg cisapride, Prilosec, etc.), endoscopic (dilation), and surgical (eg takedown of fundoplication) therapies.  Admittedly these all are problematic in her case.  Although we are not yet at this point, surgery as radical as an esophagectomy with colonic interposition could be required.
  • The patient does have tracheomalacia that is quite impressive when viewed endoscopically. However, the endoscopic appearance does not appear to significantly differ from that noted in 1991.  I am concerned her FVC has dropped from 3.0 to 2.5 over the past 5 years; however, this may be related to her acute bronchitis.  I do not feel that specific therapy for her tracheomalacia such as stenting or re-operation is indicated at this time.  I would like to repeat her spirometry after we have attempted to better control her aspiration.
  • Another issue is that her spirometry is more consistent with restrictive than obstructive lung disease. I feel this may likely be a failing of the “specificity” of spirometry in differentiating these classes of disorders.  Clinically and radiographically she does not appear likely to have a classic restrictive lung disease.  Further workup of this using lung volumes, DLCO, fluoroscopy of the diaphragms, chest CT, or other tests might be considered in the future.  This has a relatively low priority with respect to her other problems at this point.

Mark R. Elstad, MD

Associate Professor of Medicine

1998 January 5:

Ginni came to my Weber State University office and said she had an appointment with Dr. Vierling the next week.  She had also received a call from Dr. Ippoliti’s office saying he would work with her around that time.  Next, the $85 Holiday Inn in Beverly Hills was the lowest, safest option, and to tell them Ginni was a Cedars-Sinai patient.  It was directly between the two offices, which were 15 minutes apart.  I loved it because it was under renovation and the room we were in was the old-fashioned cowboy-themed room, a love of mine from childhood.  We used a travel agent for the actual air travel and car transportation.

1998 January 14:

We saw Dr. Andrew Ippoliti at the UCLA Medical Center in regards to Ginni’s esophagus.  He did not agree with the idea of Barrett’s Syndrome and felt her esophagus did not merit that diagnosis.  He said the larger picture was the liver and its problems.  He also said it would not be worthwhile to take down the partial fundoplication of the stomach and that the surgery had been appropriate.  We did not feel comfortable with his interpretation but left it for the time being.

On the same day, we saw Dr. John M. Vierling at Cedars-Sinai Medical Center.  An extensive history was taken as well as a nominal exam.  Cholestyramine therapy in a dose of two 4-gm packets each at breakfast, lunch, and dinner was begun in hopes of alleviating her pruritus.

An MRI of the abdomen was performed both with and without contrast at Cedars-Sinai Medical Imaging Group.  The findings were alarming.

  • The liver was abnormal.
  • Several masses were identified within the liver, found in the inferior aspect of the posterior segment of the right lobe of the liver.
  • Additional similar appearing masses were found, one in the anterior segment of the right lobe (4 cm x 4 cm x 3 cm), another in the medial segment of the left lobe (2.5 cm x 2.5 cm x 2 cm), and another in the caudate lobe (4 cm x 4 cm x 3 cm).
  • There is a subtle mass lesion within the lateral segment of the left lobe.
  • The abdominal vasculature is abnormal. The portal vein does not appear to be patent, and there is a large caliber inferior vena cava.  The description was quite detailed.
  • The spleen was moderately enlarged.
  • There was a fluid collection identified in the inferior right chest. The etiology of the fluid collection was uncertain.

The summation of the above was listed under IMPRESSION and, although some is redundant, seems important:

  • Multiple hepatic lesions, the largest of which is in the inferior aspect of the posterior segment of the right lobe of the liver.  The neoplastic disease cannot be excluded, although the signal intensity is more consistent with hepatocellular adenoma of adenomatous hyperplasia.  The inferior lesion is worrisome for fibrolamellar hepatocellular carcinoma.
  • The ill-defined lesion, a lateral segment of the left lobe of the liver. The neoplastic lesion cannot be excluded.
  • Portal vein occlusion, with either a probably splenorenal shunt. Significant splenic varices are noted; retroperitoneal, as well as epigastric varices, are also present.
  • Fluid collection, anterior chest, of uncertain etiology. This may be the residue of some prior surgery.

Virginia’s Biography Born Unable to Swallow Ea-Tef

Outpatient MRI Report Findings:

An MR Chollangiogram was performed, which shows a patent and normal-appearing common bile duct.  The intrahepatic common bile duct also appears normal, as does the region of the bifurcation.  The intrahepatic ducts appear slightly attenuated for age, an appearance which is likely secondary to the patient’s multiple liver abnormalities.  There are no areas of cystic dilatation of the biliary ducts noted.  There are what appears to be dilated bile ducts within the inferior aspect of the posterior segment of the right lobe of the liver, where the patient has a mass noted on her MRI examination.  It is uncertain whether this is a scar or dilated bile ducts within the mass, however, this represents dilated bile ducts.

The gallbladder appears normal, with the exception of some component of sludge.  A fluid collection is identified anterior to the liver, likely in the inferior anterior aspect of the right chest.  The etiology of this fluid is uncertain, but this may be secondary to the patient’s multiple previous thoracic surgeries.


  • Normal extrahepatic and intrahepatic common bile ducts, with attenuation of the intrahepatic duct. This may be secondary to the patient’s multiple hepatic masses.
  • Probably dilated bile duct, inferior aspect of the patient’s right liver mass.

1998 January 15:

Surgical Pathology Report

  • Liver Biopsy showing complex features.
  • One fragment shows generally intact architecture, but with a slightly enlarged and fibrotic portal tract with periductal fibrosis and a focus of ductular proliferation (this pattern is sometimes erroneously called “bile duct adenoma”).
  • Other fragments are highly abnormal with fibrosis, thrombosed vessels, sclerotic bile ducts, and multiple foci of ductular proliferation (this pattern is sometimes called “bile duct adenoma”), one of the foci is somewhat atypical.

This biopsy is not diagnostic.  The fibrotic area could represent the central portion of focal nodular hyperplasia, partial nodular transformation, or a form of congenital hepatic fibrosis, but the correlation with clinical and imaging observations is necessary.

1998 January 19:

CT Guided Core Biopsy Mass Right Lobe of Liver and CT Guided Core Biopsy Mass Lateral Segment Left Lobe of the Liver.


  • Liver, right lobe, biopsy: Suggestive of liver cell adenoma.
  • Liver, left lobe, lateral segment, biopsy: Suggestive of focal nodular hyperplasia (FNH).

1998 February 4:

Department of Defense / Armed Forces Institute of Pathology / Washington, D.C. – Consultation Report on Contributor Material:

  • Liver Biopsy, Left Lobe (N): Focal Nodular Hyperplasia.

Liver Biopsy, Right Lobe (N):  Benign hepatocellular neoplasm suggestive of Focal Nodular Hyperplasia.

We agree with you that the sections of the biopsy from the left lobe (Block 13) are from a focal nodular hyperplasia (FNH).  The biopsy from the right lobe (Block A) could be from a hepatocellular adenoma, as you suggest.  However, several histologic features favor an FNH.  These include part of one septum, patchy sinusoidal capillarization (as is seen in the extensions from the septa of FNH), the well-developed reticulin framework, and the presence of occasional pseudoxanthomatous cells (cholate stasis).  We would expect some focal positivity with rhodanine and/or Victoria blue stains.  Cytokeratin stains in FNH often show a change of phenotype of liver cells (adjacent to the septa) to a bile duct-cell phenotype.

1998 March:

We had an appointment with Dr. Tietze (Gastroenterologist) at the University of Utah Medical Center.  Virginia was taught how to give herself injections of a medication to deal with the pruritus.

Virginia’s Biography Born Unable to Swallow Ea-Tef

1998 April:

Dr. Tietze had Ginni come back in and do a repeat of the IV medication, explaining that the dosages had been given incorrectly.  There was no relief after four or five hours of ½ hour increments of increasing amounts of medication.

1998 August 12:

This was a time when Ginni said she felt different and thought she might be pregnant.  I told her it was wishful thinking since I had been specifically told when she was a baby that she could never have children.  A close friend of hers went with her to her local doctor in Brigham City.  He also denied it was possible.  The friend said they would not leave until the doctor did a pregnancy test.  It was positive.  He performed an ultrasound.  Ginni was not only pregnant but 18 weeks pregnant by measurement.  Then the doctor lied to them and said he was sending Ginni to St. Ben’s Hospital in Ogden, Utah for a routine ultrasound.  He wrote in later-seen notes:  “concern is for the fluid in fetus’ abdomen.”  For lying to us, this doctor WAS history.  No one lies to us and gets away with it.

1998 August 19:

An ultrasound was done at St. Ben’s Hospital and sent to Dr. Silver of the University of Utah Medical Center.  We must have gone there to get the results.  “Much fluid in fetus’ abdomen.  The intestines are in a mass.  They probably have a blockage and have ruptured into the abdomen, setting up inflammation throughout the intestines.  There is possible pressure already placed on the heart.  Fetus presents himself as a boy.  He sucks his thumb and seems to wave at us.  He is a fighter.”  Amniocentesis was performed.  “It will rule out many things, including Down’s Syndrome and Cystic Fibrosis, as well as serious chromosomal problems.”  Ginni named him Noah, as in pure and blessed.

1998 August 25:

An ultrasound was again performed at the U of U Medical Center.

  • Silver’s Assistant noted that Noah had more fluid than before. “Concern for the heart is expressed.”
  • Primary Children’s Hospital: Pediatric Cardiac Surgeon performed an ultrasound.  She found Noah’s heart strong and beating normally in a perfectly-formed four-chambered heart.  Thank God!
  • A geneticist at U of U Med Center: We went in with an attitude and she had one too.  I told her that her information would be truly a waste of time since abortion was not nor would ever be an option, and I made her to clearly understand that.  However, the tests shortly after this visit had ruled out chromosomal abnormalities or viruses.

1998 September 16:

I wrote – Ginni saw Ally Phipps (certified nurse midwife).  She will be at the birth to protect Noah and Virginia and give them the honesty, concern, and care they need.  We are determined that Virginia will have a good birth and enjoy Noah as her son period.  No matter what lies ahead for either of them!  Virginia deserves this and I will see that she get this.

1998 September 28:

Another ultrasound at St. Ben’s with Dr. Silver’s assistant.  “Fluid seems to have increased.  Something is now floating around inside the fluid in the abdomen.  Probably part of the intestines has “necrosed” and floated free.  This lends credence to the previous diagnosis being correct.”  Of course, their concern was for the amount of intestines still intact and usable.  This doctor feels the problem of pressure from the fluid is on the development of the lungs.  The plan at birth was to drain fluid from the baby’s abdomen just prior to a normal vaginal birth, with surgery afterwards.

I noted that in Med-Line there was an article on experimental transplantation of the intestines, in case we needed it.

1998 October:

There were various appointments with Dr. Silver and nurse/midwife Ally Phipps.  Noah apparently has not experienced lung or heart problems from the fluid, and it seems to be staying proportionally the same.  Also, there was no sign of global problems.  However, the doctors were not all saying the same things and this left me skeptical of what they said.  So I sent e-mails out to several major hospitals.  Loma Linda Hospital responded and said that the best doctor is in our back yard – U of U Med Center’s Dr. DeVore, who also works at Cedars-Sinai.

I called and made an appointment.

1998 October 16:

We saw Dr. DeVore in Salt Lake City. He gave us several opposing opinions.

1) Must have a cesarean section to give Noah the best chances.
a. Contractions could possibly compromise the blood supply to the intestines further, ruining whatever is left.
b. Must have teams in place ready to care for the baby and also for Virginia’s breathing and/or any other problems that seem to crop up (prime anaesthesiologist, etc).

2) Under no circumstances should the fluid in the baby’s abdomen be drained while inside the uterus. Not only would there be the problem of making sure they go in at a good point and avoid little problems like the liver and kidneys, but I am mostly afraid of the effect of the draining on the systems of the body.

Dr. Silver disagreed with Dr. DeVore in every aspect. Now what? A third opinion?

During all of the pregnancy, I had prayed. First I prayed that Noah would live long enough for Ginni to feel him moving inside her. When that happened, next I prayed that he would live long enough for her to feel him kick. Then I prayed that he would live long enough for him to be born and her to see him alive. Each time I apologized to Jesus for coming back with the same prayers as I would thank him and say “just one more thing.” He must have heard me and maybe laughed.

1998 November 16:

Ginni had been having Braxton-Hicks contractions for a week. She called me and said she had called Ally Phipps to ask if the really “HARD” ones she is having right now could hurt the baby in any way. Ally was really panicked and wanted her to come in immediately. Jeff took Ginni to the hospital. Ally said everything was okay.

THEN I remembered, Ginni doesn’t feel pain – at least the way we do. I panicked. Dr. Silver called me and wanted to know FROM ME who is doing transplants if indeed they are being done. I had only the name of the state of Nebraska from Channel 4 News who reported a story of such. I had the name of the church that reported the story. The recipient baby did not make it.

Virginia’s Biography Born Unable to Swallow Ea-Tef

My notes stop here so I will put down what I remember.

Ginni called me and was having severe Braxton-Hicks contractions.  My mind finally clicked on and I knew she was in labor.  I took her and Jeff to St. Ben’s hospital after calling them and Ally Phipps.  Ginni was INDEED in labor and about to deliver.  The time had come and I did not need decisions any longer, since it was out of my hands.  Dr. Silver listened to my recent history and the fact that Ginni did not feel regular pain.  I answered every one of his questions.  My husband, Wayne, showed up some time through this.

Another thing – they had wanted to send her by LifeFlight to the U of U Med Center, but her labor was too advanced.  Jeff had hysterically said he could not afford it.  I turned to the doctor and said the corny-sounding phrase, “Money is no object.  Do what you must.”  But Life Flight turned back.

The machines showed a low heart rate for Noah, although the doctor had planned on a regular delivery.  Then he took me outside and said they were going to have to do an emergency C-Section.  I quietly told everyone what was happening as the medical team prepared.  We did an extremely wild and fast “bed drive” down the hall with everyone talking over each other.  We arrived and Jeff wanted to go in.  The doctor said okay.  And the doors closed.

Soon the doctor opened the doors and grabbed me, saying I had been a part of everything all along and I should be in there.  I saw the nurses glare at me but he said it would be okay.  The doctor said there was no time to scrub and gowned me himself.  Jeff stood at the right side of her head and me at the left.  I could stand on tiptoe and see everything.  It was all very fast and professional.  Then there was Noah, held up for all to see, breathing and everything!  He was snatched away by another medical team and we were left with Ginni.

Ginni had been given anesthesia of some sort and was quite asleep.  I watched her as they stitched her up, placing her uterus on her upper abdomen.  The area inside her was absolutely empty, not the way I had imagined it.  It was so routine and Dr. Silver and the nurse talked about everyday things.  I had started in nursing way back and was doing the “book” learning before clinical, enough that I had a major in English later on.  But I had never realized the boredom that comes after the excitement.

The team with Noah reported back.

They had drained some of the water in the abdomen – AND I remembered that was definitely NOT supposed to be done.  Then Noah was in critical condition and they called for an ambulance.  I said goodbye to a sleeping Ginni and to Jeff who would stay with her, and we rushed to our car.

I prayed unashamedly for Noah to live – I couldn’t stop myself.  We drove quite fast but the time getting there seemed much longer than ever before.  We arrived and hurried to the NICU.  The nurse said visiting hours were over the period and where was the mother.  I said snidely that the mother was in another hospital recovering from a C-Section, and all I wanted was to know that Noah had arrived alive. She was unremitting, saying she could talk only to the mother.  I tried to tell her I was then the legal guardian in place of her mother, but she was totally obstinate.  Tears erupted from me.

Then a young doctor grabbed us and said come on in.  We went in through the maze of incubated babies and were able to see Noah breathing fine in an incubator, with wires everywhere.  I thanked him profusely because that set my mind at ease.

We were in the waiting room when two doctors who looked like kids told us what was to be done.  They asked why the fluid had been partially drained at St. Ben’s Hospital.  I said it was out of my hands at that point.  Then, whatever was said next, I got mad.  I told those two punks that why should the students operate and not the creator of the original surgery.  I demanded that Dr. Dale Johnson be brought in.  They said, “You don’t want that old man!”.  Wayne restrained me, I think.  The conversation had become shouting and all the other parents were watching us.  Finally, they called Dr. Johnson in.  I gave him the recent history and he gladly took over Noah’s case.

He was a bit grayer but otherwise, he looked like a miracle.

After Noah was stabilized, the surgery was set.  We stayed in the new-to-us Ronald McDonald House for the night.  Then the surgery was performed with expertise the next day.  Noah was indeed alive.  Part of his intestines, including his lowest valve into the intestines, were necrosed and had to be removed.  The bowels and the lower part of his esophagus were resected.

To follow was the routine scrubbing up and gowning to see him during visiting hours.  If the nurse remembered me, she didn’t show it.  When Ginni was better, she and Jeff took our room at the Ronald McDonald House and we went home to rest.  Noah seemed to weather his surgery and ensuing care like a pro.  Wayne thinks Noah was in the hospital for a month.  It was hard to say goodbye to Dr. Dale Johnson.  How do you thank a man who saved both your daughter and her son?

Many doctors’ appointments later, Noah was fine.  One day, Ginni went to the restroom and the doctor said to me to look at Noah, but not as a grandparent.  I looked at him on the floor and his face was similar to a Downs’ Syndrome patient.  I said so and then said he seemed so perfect.  She agreed.  It seemed as though we had missed another bullet.  I wondered how many more we could miss.  Years then passed.

2008 May 2:

I was taking Ginni to Salt Lake City to shop.  She said she thought she was having Braxton-Hicks.  I felt her stomach and then sped to the U of U Med Center.  They bypassed normal procedures and we were in a bed in the “impending delivery” room.  The anesthesiologist came in to give her an epidural but Ginni said firmly that she felt like she had to push.  The nurse backed the doctor off and we each took Ginni on each side and laid her down.  Little “Virginia Natalie Hunsaker” came right out on the bed.  I got to cut the cord, and Wayne and Jeff came about 20 minutes later.  She had “pooped” while in the uterus causing meconium aspiration syndrome.  She also had immature lungs.  Natalie stayed in the hospital for 15 days.

2012 December 2:

Ginni gave birth to another daughter at St. Ben’s Hospital in Ogden, UT, named “Ava Grace Hunsaker.”  The baby was a bit premature.  However, Ginni had edema and blood clots, after which she got pneumonia.  She had to go to the U of U Med Center for approximately 5 days, from the day after Christmas to December 31.  Ginni had been really sick for quite a while before and afterwards with nodules on her liver.

I have no notes from that time.

Virginia’s Biography Born Unable to Swallow Ea-Tef


Virginia loved her little family.
She fought hard to do even normal chores. She was losing strength all along. There were many doctors’ appointments.

2018 March 5:

Ginni came over and complained of pain in her chest. Thinking it was probably related to her esophagus, I dismissed it. My last words to her were goodbye.

2018 March 6:

We received a call from Jeff. Ginni had sent Ava Grace to brush her teeth. When Ava came back into the room, she later told me, “Mama’s eyes were crazy and she was lying on the bed really still.” Ambulances were called and we were driving too slowly for me, but I knew Wayne thought she was gone.

I think they tried to cut open a place to allow Ginni to breathe since there was a lot of blood. I thought perhaps they had cut her chest open where the artery was, and I still think it is true. She had an instant heart attack taking her to Heaven. I never received an autopsy report. The fight was over. Her sweetness to everyone was remembered.

                           She was no longer in any pain or itching or fear.

Ginni was 45 years old when she died.

R.I.P Ginni xx

Seen here is her 40s

Virginia’s Biography Born Unable to Swallow Ea-Tef