She’d Never Even Heard Of It…
Hypoplastic Left Heart Syndrome
Amanda Stephenson Auvenshine, almost everyone in the town of Comanche knows her. Most also know she has a daughter named Daicee and that Daicee has had a struggle. That is pretty common knowledge in Comanche, Texas.
Where most people get a little fuzzy is in knowing just what Daicee’s struggle is, and what that means for both her and her mom.
Here at United, we’ve talked for months about bringing Daicee’s story to you, and this past week Amanda and I actually sat down and put pen to paper. By the time we finished, I was once again reminded that those of us who have not walked the road of a sick child really have no problems…no problems at all.
Amanda and husband, Tim, wanted children, but children just didn’t come. By Amanda’s own admission, she wore out the path between her home and the pharmacy where she purchased home pregnancy tests.
When the positive finally registered, Amanda and Tim were ecstatic. She was three weeks pregnant and had no reason to expect that she would have anything but a normal pregnancy and a normal baby, a baby that would be the first grandchild on both sides of the family so you can imagine the excitement everyone felt.
For a while, everything progressed normally, and Amanda’s first sonogram came and went with nothing but the usual excitement and anticipation that comes with those first baby photos. Gradually, however, the baby seemed not to move as much as she should have been moving, and that was enough for Dr. Richard Byrd (for whom Amanda has nothing but praise) to order a second sonogram.
When the results were in, Amanda was told that everything looked just as it should look; however, the baby continued to be a lazy baby, and Dr. Byrd “just had a feeling…”
Once again, Amanda was sent to the sonogram table and a doctor who wore the name of specialist. It is at this point in her story that I hear a bit of bitterness creep into the voice as she told me, “the nurse looked at the sonogram and told me everything was fine. The doctor couldn’t be bothered with me because he was on Ebay trying to win Brittany Spears tickets!”
Eventually, there was a fourth sonogram, and still nothing seemed to be wrong, and the on May 2, 2004, Amanda’s water broke…but contractions did not follow so her labor was induced.
They started the pitocin, but the baby’s heart rate dropped and they had to stop it. Then, they started it again and both of our heart rates dropped, and they had to stop it again. The pitocin was administered a third time, and when the baby’s heart rate dropped yet again, it was decided to do a C-Section.
While in surgery, the first words Amanda heard from the specialist were, “Oh, I cut her head. Be glad it’s not on her face!”
Sure enough, baby Daicee was born with a large gash on the side of her head.
As far as Amanda knew, she had delivered a perfectly healthy 5 lb. 13 oz. baby girl who was 16 inches long, small, but not dangerously so. What she did not know was that little Daicee was being kept in an oxygen tent for two reasons: she was blue, and she wouldn’t wake.
Two days later, the new mom was holding her baby girl when she took two “funny” breaths,” causing the nurse to take the baby and head toward the echocardiogram machine.
What was discovered with the echocardiogram and what should have been discovered with the sonograms was that instead of the normal four chambers, Daicee’s heart only had two. Her top left chamber was the size of a pin and the bottom left chamber was simply missing. (Obviously, Amanda voices the exact same things here that you and I would voice if it were our child and something so obvious had been missed by people who are supposed to know what they are doing!)
Instead of going home, the tiny baby was immediately put on a flight to Cook Children’s Hospital in Fort Worth while Mom, Dad, and Amanda’s mother raced their vehicle toward the Metroplex. Before they could reach the hospital, someone from Cook had Amanda on the phone, explaining that she would have to give permission over the phone for the hospital to treat the baby. Failing to do so would mean that Daicee would not be alive when her family arrived.
Daicee was immediately put on meds, and two days later and at 4 days old she was in the heart surgery that was supposed to be the first of a 3 series process. Named for the doctors who developed them, the following are the names of the three heart surgeries that Daicee needed.
1. Norwood- Go in and put in shunt that makes blood flow and mix easier. Daicee was in the hospital for two months and on a ventilator for 6 weeks.
2. Glenn- Amanda uses the term replumbed for this surgery. Daicee was almost four months old when she had it, and she was only in the hospital for two weeks this time.
3. Fontan- This was the last of the three surgeries. Daicee was too small and frail to have this surgery until she was almost four. It should have been a nine hour surgery, but after thirteen hours, the doctor told her parents that he was going to have to close her up and that he did not think he had been successful. Daicee remained in the hospital, and the surgery was repeated three weeks later. She celebrated her fourth birthday there.
The little girl had been through four heart surgeries in four years and, of course, I had to ask what doctors accomplished with these surgeries.
“By the time you have these three procedures, doctors have taken the major artery to your heart, unhooked it from the heart, and attached it to the lungs so that the blood goes to the lungs first.
“Every heart surgery caused blood clots that caused strokes…and they caused damage each time. Daicee has extensive brain damage that people just don’t realize she has.”
It was at this point that I asked the hard question, hard because I’m a parent, and I know how protective we are of our children; however, I also know that those of you who read Daicee’s story need the knowledge that comes with it.
“Was Daicee born with complete mental faculties,” I finally managed to ask.
“She was, but with each surgery came more brain damage. The clots caused a lack of oxygen to the brain, and that caused damage. Stats show that 50% of those who have these surgeries will need some type of special education for developmental delays.”
In addition to the heart surgeries, Daicee had another surgery. She was three when it was determined that she had something called Chiari Malformation of the Skull. That just means that the base of her skull was too small and the spinal fluid couldn’t flow correctly. This caused her to be dizzy and run into things because her balance was so affected, something I can relate to easily.
As if all of this was not enough, Daicee began to have seizures after the first heart surgery. (She was on medication for the first year but was taken off of it when she was one. At three, Daicee had a seizure that lasted over 45 minutes, the first of many to come.) This was a tremendous problem because it took a while for doctors to find the meds that would work for her. In the meantime, little Daicee logged yet more flying hours as paramedics sent her back to Cook over and over until the proper medicine was discovered.
Today, Daicee is ten and the eighteen meds that came home with her from the hospital have dwindled until she in on only three: a baby aspirin, Prevacid (for a nervous tummy), and her seizure medicine, which will be discontinued this summer.
“When we first came home from the hospital with eighteen different medicines, our world revolved around making sure with gave each medication at the right time. We also had to give two shots of Heparin each day to help thin her blood and cut down on the risks of clots. Its really hard to have to poke your baby twice a day and seeing the bruises all over her little legs.”
Again, came a hard question.
“So…where is Daicee now mentally?”
“Her teacher has done every single thing possible to help her learn to read, but she just can’t. She can write her name, write dog and cat, and that is about it. She can’t read at all, but her social skills are so good that most people just don’t realize any of this.
“Because of the way technology has exploded, I believe that she will be able to compensate. She loves music and art. Ninety-five per cent of what she knows is music oriented. If she is interested in it, she can learn it.
“One thing that I want people to realize is that 1 in 110 babies are born with some type of heart defect, and the number one killer of children is heart related. People just don’t realize this. We can save many lives by pushing to have a Pulse Ox test administered at the time of birth. Why this is not already done, I’m just not sure.”
There’s just no way to know what the future holds for mom and daughter. The oldest children who have had these surgeries are now in their early 30s so it’s just been too soon to know anything beyond that point. For now, Amanda keeps a philosophy that we all should adopt.
“When we wake up in the morning, if we are breathing, it’s gonna be a good day, and that’s how we live life.”
And herein it is that we find our message of hope. Sometimes when it seems that the sky has truly fallen, if we only hang on, we will come to realize that it didn’t fall at all….it only tilted for a while. Daicee is living, breathing, laughing, and loving proof of that.
If you would like more information on this subject, Amanda is glad for you to contact her. firstname.lastname@example.org