Early in my first pregnancy I knew if I was to have a girl I would name her Zoie. The name Zoie means "life, to live" and to me it has meant kindness, love, understanding, and unselfish giving all of my life. Zoie was my great grandmother’s name and she was a strong woman that everyone loved and even before I knew how fitting the name would be, it was given. Routine blood work done in my 16th week came back showing that chances were high for my baby to have Down Syndrome. This was the first time during my pregnancy that I held my breath until I reached the car to sob. The appointment for genetic counseling and a level 2/3 ultrasound was made. On the day of that appointment we met a friendly technician who explained what they looked for in DS babies. During this time she never noted any of the things she had mentioned. After looking at the screen for a while she said she would be right back. She came back with the doctor who started again with the ultrasound. Quietly he said to me I think there is a problem with your baby’s heart and that oftentimes heart defects go hand in hand with DS. Heart defects? What are heart defects I thought? I mean I must have known that children were born with terrible things that I didn't know the name of and that sadly they got cancer but I never thought that my own child would really be missing some of her heart! Again I held my breath, but this time I started praying and I haven't stopped since.
Zoie was born on October 25, 2002, at Grady Memorial Hospital in Atlanta, Georgia. She was crying, she was alive- prayer number one answered. I saw her briefly that night, before she was whisked away to the NICU to be readied for transport to Children’s Healthcare of Atlanta. The next morning she was intubated because her oxygen level was so low. Her heart defects were confirmed, hypoplastic right heart syndrome (HRHS), tricuspid atresia (TA), transposition of the great arteries (TGA), coarctation of the aorta (CoA). I of course had no idea at this time what all of this meant except she would require open heart surgery within her first week of life to remain alive.
The transport team brought her by that afternoon before they left. She seemed so tiny and peaceful it was hard to believe that she was fighting for her life. It was so hard to see her in the hospital with all the wires, paralyzed so that she wouldn't increase her heart's workload; we were terrified, confused, and happy that she was going to have a chance. Those first few days are a blur now. On her third day of life, Zoie went into the OR for the Norwood procedure, an atrial switch and a graft to her aorta. The operation took about 8 hours, a little longer than expected, but I can only imagine how small the vessels of a 5-pound infant are. That was the longest day of our lives. Each hour a nurse would call and we would know that she was on the bypass, that they had to cool her body temperature way down because of the extended time on bypass. We were told that things were going good, that they were almost done; the surgeon will be up to talk to you. My most clear memory of that day is a tightness in my chest that I still have sometimes in the middle of the night when I dream of that day. Every breath that day was forced.
Her operation was a success and the surgeon was pleased with his work and with how she was recovering. Seeing her after surgery was hard because she was so swollen and not moving because her chest was still open to allow her heart room to swell. Nothing can prepare you for that, it is such a helpless feeling. I can't continue this story without mentioning the wonderful people at Ronald McDonald House which became our home away from home. There we were reminded that we weren't the only parents in the world going through this. I do wish we would have been in the frame of mind to keep in touch with the friends we made there, but we will never forget them.
Zoie went home right before her 1 month birthday. She has done very well and went through two more operations since her birth. We thank God each day, our prayers are answered each day we have with her. I expect her to lead a long wonderful life but we take each day one at a time because in this world of CHD you never know what problems the morning or night can bring.
Zoie is such a strong little girl who is just becoming proud of her "zipper" or scar. Her great grandmother just had open heart surgery and the other day Zoie told her great grandmother, "You know I have one of those too, but mine is all better now." Without the research that the CHF provides we may not have had the chance to hear her say those wonderful words. I have never met a child with more love and happiness to share than a child who is fighting congenital heart defects!