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Thomas

Hypoplastic Left Heart Syndrome, Pulmonary Vein Stenosis


Thomas

When we found out we were pregnant with our first child in 1997, we were thrilled. Our baby would be the first grandchild on my husband’s side of the family. I was the first woman on my side of the family to have children. This child would know a loving home with two parents who loved not only them, but each other, deeply. This child would have the love of grandparents, aunts, uncles and friends. And this child’s parents knew joy.

I took care of myself while I was pregnant. I did not drink alcohol, I did not smoke, use drugs, or even have anything with caffeine in it. I was careful to exercise, I tried to follow all the dietary recommendations for pregnant women and made sure to sleep as necessary.

My husband and I read books and planned for an unmedicated, natural childbirth. Working closely together we interviewed pediatricians, obstetricians, and midwives. When we chose the hospital and midwives to deliver our baby, we felt very confident in our choice. At that time we lived down the street from the hospital, so our commute would be less than five minutes, and everything we read indicated that we were making the right choice.

So on November 11, 1997 when I gave birth to my son, Thomas William Turner, I felt unmitigated joy. My labor went textbook perfect and my little boy was put on my chest at 8:08 am.

But Thomas couldn’t breathe.

They took Thomas away from me and began to work on figuring out why he couldn’t breathe. The nurses assured me that it was probably nothing…probably pinholes in his lungs, which was very common. A shot could clear that up.

They were wrong.

After spending precious hours trying to figure out what was wrong with our little boy, Thomas was intubated and sent to New England Medical Center. I was still recovering from labor and delivery so I could not go with him. My husband followed the ambulance transporting our son with his parents.

The nurses encouraged me to rest, telling me that Thomas was probably fine. They gave me a sedative to help me relax and get some rest.

The next thing I heard was the telephone. My mother had answered the phone and said, “She’s sleeping…” There was a long pause and then my mother gave me the phone. My husband’s voice came through the handset, shaky, murky with tears, and I became very afraid. He told me that Thomas had a less than 30% chance of surviving the night. He had Hypoplastic Left Heart Syndrome, and we had to make a decision now. He presented me with three options. We could allow Thomas to die (compassionate care), we can try to get him a heart transplant (which was very unlikely to succeed) or we could opt for the Norwood procedure, a palliative surgery that would replumb Thomas’ heart.

“WE CAN’T JUST LET HIM DIE!” I burst into tears and screamed into the phone. My husband agreed, and so we decided on trying the Norwood Procedure.

With that decision made, one of the midwives offered to drive me to Children’s Hospital to see my son. We were told that I might not make it there before my son died. That drive began the first of the many trips I would make over the next 10 days to Children’s Hospital. Thomas was given those 10 days to rest and rally his reserves for the surgery, which we were given poor odds for him surviving.

The odds were not in my son’s favor. Thomas died on November 21, 1997 at 4:55pm. We buried him the day before Thanksgiving.

When I asked why my son had this horrible birth defect, we were told, “We don’t know…it’s a fluke.” Well, I found out later on that my son’s “fluke” falls into a category of flukes known as Congenital Heart Defects or CHD. CHDs are the number one birth defect…approximately 1 in 100 babies are born with a CHD every year in the United States.

And although research is bringing us closer to finding some answers to the question of why CHDs occur, we haven’t arrived yet. We need to figure out why these birth defects happen, and if there is a way to prevent them. Is it genetic? Are there environmental factors? Do heart defects occur more often in one area of the country than in others? Are there even areas of the state that report higher incidences?

I will spend the rest of my life trying to help anyone and everyone who wants to find the answers to these questions. If and when I see my little boy again, I want him to know that his death moved me to action. It drives me to keep searching. Thomas' life gave mine purpose. His death still hurts my soul.

Sheri, mother to Thomas William (Massachusetts)


This article was last updated on June 3, 2001
Photograph added June 8, 2002

  • Born: November 11, 1997
  • Diagnosis: Hypoplastic Left Heart Syndrome, Pulmonary Vein Stenosis
  • Treatment: Balloon catheter to open PDA and Norwood Procedure


 

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Disclaimer: Our members' stories represent their own perception of their experiences, and the medical information contained within has not been reviewed for accuracy prior to publication. Stories are presented for informational purposes only, and should not be substituted for professional advice. Always consult your (child's) physicians with your questions and concerns.
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