Sunny Kate—14 months old

My delivery with Katie was easy and fast. I walked in to the hospital dilated to 6 cm and delivered about two hours later. There were no signs of any problems at her delivery.

About four hours after she was born an ICU doctor came in to my room and told me that they were concerned. They said that Katie was having some "dusky" spells. They weren't sure what was going on. They continued to watch and test Katie for the next 36 hours, and finally decided to perform an echocardiogram. That is where they discovered Katie had a severe heart condition. She had a critical coarctation of the aorta with a small aortic arch, a small left ventricle, a small mitral valve and aortic valve, a bicuspid aortic valve, tricuspid valve regurgitation, and an ASD.

The cardiologists and surgeon decided that a single ventricle palliation was Katie's best chance. They then labeled her condition as Hypoplastic Left Heart Syndrome and performed the Norwood when she was 1 week old. Katie had a rough time coming off bypass and then was very sick for 4 days following. She was in the ICU for 3 weeks and then finally discharged from the hospital at 1 month old.

Those next 4 months were very hard. We spent most of our time at the doctor's or at home feeding her and giving her medicine. She wasn't able to eat by mouth. We worked with OTs and SLTs trying to get her off the NG tube. But looking back, I realize it was really a matter of heart function. Thanks to fabulous therapists we were able to keep the muscles in her tongue and mouth strong even though she wasn't eating. We were also able to create "pleasant oral experiences" (pacifiers, etc.) so that she wouldn't develop major oral aversions that often happen with kids that have NGs for so long.

We had to keep her away from people completely. We didn't have any children at our house that whole summer, which was really hard for our older two kids. But we just couldn't risk getting Katie sick. We really didn't let anybody touch her, unless they had washed their hands thoroughly and were really careful. This may sound silly, but socially it was a really tough summer. We were very lonely.

Finally when Katie was 5-1/2 months old she was ready for her second surgery, the Glenn. We were fortunate to get Dr. Charles Fraser, the chief of pediatric heart surgery at Texas Children's Hospital (TCH), to agree to do Katie's next surgery. We took her to TCH for her cath so that the surgeon could get a picture of what her heart condition was. The team at TCH thought that Katie's left ventricle was sufficient for normal, biventricular circulation! They were going to undo her Norwood and reconstruct her heart back to normal. He said that this is a very rare thing to happen. He had only done 4 of these himself. The surgeon, Dr. Charles Fraser, said that he really had to look at her valves surrounding the ventricle to make sure they would be able to handle it. They would call us while they were in the operating room and tell us which surgery they would perform—the Glenn or the complete repair.

Three hours after we sent Katie into surgery, they called us from the OR to tell us that Dr. Fraser felt like Katie's valves would be able to handle biventricular circulation. We really couldn't believe it. We understood that it was a much riskier surgery than the Glenn, though. But the risk was worth it. It would completely change her life.

It was a long, long day. Katie was in surgery for almost 9-1/2 hours. But when we got the call that Katie came off bypass smoothly, we cried and cheered! The surgeon and one of the nurse practitioners came out after her surgery and told us about the surgery. Dr. Fraser told us that this surgery may have increased Katie's life expectancy, and it was a possibility that Katie may be able to have children when she's older. He said it was likely that Katie would need more surgeries to fix her valves, but overall, this was a dramatic change in Katie's life. We truly consider this a miracle.

Katie started eating by mouth about 1 month after surgery. She has no problem eating by mouth and can drink up to 8 ounces of her bottle. She is now 18 months old and is almost right on developmentally. Also, her sats are at 100%.

We are also so grateful to the doctors, nurses, therapists, and our dear friends and family that have taken care of Katie, and us, through this. We have had outstanding care and support.