Kaitlin’s Heart Story

Told by her mom Sarah.

Diagnosis: Hypoplastic Left Heart
At: 20 weeks

I was about 20 weeks along when I found out about Kaitlin’s defect. I went in for the usual sonogram and they called me afterwards and told me someone had folded the pictures the wrong way and the doctor couldn’t read it. I look back now and I think they knew something was wrong, but didn’t want to frighten me. So they set up another sonogram, this time they told me we think something is wrong with the babies heart we want you to see a specialist. I didn’t really think too much of it. I guess I was like, it couldn’t happen to me, type thing. Two weeks later I went to the specialist. I went alone, because 1) the father was not in the picture

Kaitlin at 10 years old with her brother Shane.

and 2) my family and I didn’t think too much of this. Well I was extremely nervous. The doctor was a jerk. He wouldn’t answer any questions, didn’t talk to me during the sonogram, nothing. After, he was like it looks like either Hypoplastic left heart or something else I cannot remember now. I was confused, hurt, pissed off. They ordered another sonogram and an amnio in two weeks. I drove away in tears, crying frantically. I went to my brother’s house because they were watching my then 3 year old son. I was a nurse’s aide so I had some medical training and my brother at the time was going to school to be a paramedic, so I got out all the medical books and started reading and explaining to them what the doctor said. Well the pessimist I am mainly concentrated on the worst case Hypoplastic left heart. I am thankful I did because it prepared me for the worst case scenario. Two weeks later I went for the amnio, this time my sister-in-law went with me, and thankfully it was a different doctor. He was nicer and explained things. They did the amnio because they said most heart babies also had Down syndrome, so we were checking for all defects really. I went away scared but better informed and another sonogram with a Pediatric Cardiologist. The sonogram with the Cardiologist lasted for four hours. Since I was so far along it was hard to get a good look at the heart, but they finally did. I will never forget sitting in the room waiting for the doctor to come explain things. His nurse, who later on became one of our nurse practitioners, was wonderful. I couldn’t not stop crying. I found out I was pregnant after almost being 3 months along. I thought I did this to this baby. I was being punished. She wasn’t planned. GUILT GUILT GUILT. The doctor came in and explained and drew pictures. Said I had three options 1) Have her and do nothing and let her die 2) heart transplant after birth 3) a three stage surgery called the Norwood Procedure.
I went home and thought long and hard. Spoke with friends and family. Changed my mind many times. The guilt never went away. The father was not speaking to me at the time. He didn’t care one way or the other. I did not think I could take care of a sick baby and my son. Then I would think, they are wrong, this baby moves inside me all day and night. There can’t be something wrong with her. I had already bonded with this baby. How can I make such drastic choices? What would be best for her and for my son? So at first, I chose to let her die. I didn’t want her to suffer. I didn’t want to be selfish. But I also did the research on the Norwood. At that time there wasn’t much on the internet (like there is now) I never considered the heart transplant because baby hearts are so rare. My brother convinced me to do the Norwood and the day she was born, I spoke with another Hypoplastic mom whose daughter had just come home from her second surgery.

During my pregnancy I did not buy very much stuff, I was kind of afraid to jinx myself. I did not want a shower. I kept to myself a lot. The hardest thing for me was that there was no one really to talk to. Not much was known back then, very little on the internet. Defiantly no support groups.
The birth was the scariest thing. I had a c-section with my son, but they didn’t want that for her. She needed natural child birth to clean out her lungs. They induced me on April 7th. I waited along time to get an epidural, because I thought it would harm her in some way. After being in labor for a long time, they had to stop it, because she was becoming distressed. After she calmed down (still has attitude) they re-started my labor. She was born around 8 pm. They let me hold her for a second and then rushed her off. She looked perfect, just like her brother, only smaller. She cried and was pink. After they stitched me up and took me to my room, they tried to take me to see her, but I was too sick. I passed out in the wheel chair. After a few hours they came in and said I had to go see her that she was having problems and they had to intubate her. They let me hold her, but I was so terrified that I would hurt her or pull on a tube. I don’t think I had ever been so afraid to hold a baby, especially my own. We live in Amarillo,TX and before she was 24 hours old we were flown to Dallas, TX.
She had her first surgery at 6 days old. She did well, but after being in ICU a week she crashed and I was in her room at the time. People really do yell Code and everyone runs to help. We had many ups and downs. She came home after 3 weeks.

She was very sick still. Had a feeding tube. Had tons of medicine, but she was always smiling and happy. At 2, 2 ½ months we went back to Dallas and they thought she need the second surgery right away. The day she went in for that was the worst day of my life. Lucky for me I had my son and his dad there. Then the doctors took me in this small room and said Mrs. Stinebaugh we do not think your daughter will make it. They hadn’t even done the surgery, just tried to open her chest and she crashed. I think apart of me died that day. I never cried so much in my life. I still cry when I think or talk about it 10 years later. After 6 or 7 hours later she was wheeled into the ICU. I was so happy to see her. It makes it really hard to hand them over for surgeries after things like that. She pulled through wonderfully. They did not do the second stage, they did a coarctation repair. Her aorta had almost closed off. We went home with only two weeks in the hospital. A week later though, we were back to Dallas to do her second stage of the Norwood. There were complications with this surgery as well. Not as severely I think. When they tried to take her off by-pass, her heart had leaks. They had to re-put her on bypass and do the surgery over. We only stayed two weeks that time also. After those two surgeries, she became a wild child. Crawling, talking, walking. Climbing on and off furniture, scaring the crap out of me.

She turned two in April and in July she had her fourth open heart surgery, the third stage of the Norwood procedure. This one went well; we were home after two weeks. She almost had to stay, because she didn’t want to eat. On Thanksgiving Day, four months after her last surgery, I found her on the floor unconscious. She had suffered a seizure. They think she developed Epilepsy from being on bypass so many times.

She is now 10 years old. Growing like a weed. We do have learning delays. She is very active. Still happy as always. I call her my flower child or hippie child. She loves everyone. We have been seizure free for over two years now. (knock on wood) She has been off seizure medications for almost three months now. When we go to her Cardiologist they are always amazed at her heart function. They say it is working like if she had four chambers. Her tricuspid valve leaks a little, but nothing major right now.

I do not regret the choices I have made for her and me. She is my gift from God. Who gets to live with a miracle each day? Not very many people. She has taught me so much. I feel privileged that God chose me to be her mother. I think she has saved my life in so many ways. It has not been and easy road. I worry about her daily. I sometimes think about what if she died today. I know it’s morbid, but it’s my way of coping for the day God takes her home.

~Sarah, July 2009