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Personal Stories ~ From Tracy Rooker
I found out I was pregnant with my fourth son at the end of April 2000. During the course of my previous pregnancy we had found out that I had apparently received the Kell antigen from a blood transfusion. My husband had to have his blood tested for it, but the doctors had told us it is a very rare antigen so the chances of us both having it and he having the positive antigen were very slim. But those slim chances were our worst realization. We were lucky though because our third baby had my negative antigen and was okay. A few months after his birth I decided to have my tubes tied. But I was pregnant less than a month before I was supposed to have it done. This time we didn't get so lucky.

We found out at 18 weeks through an amniocentesis that our baby had the Kell positive antigen. I was followed by routine amniocentesis and frequent ultrasounds. At almost 25 weeks I went in for what would be the last amniocentesis. It showed that the baby was a little anemic but nothing major yet. However, the radiologist thought he saw a cyst on the baby's brain. So I was sent to a perinatologist the following Tuesday. There was no cyst. It was all fluid. The baby was severely anemic, the testing had all been wrong, and no one knew how long this had been going on. I had been complaining of decreased and weaker fetal movement, but it was chalked up to the baby being small yet. I was admitted, and a blood transfusion was scheduled for the following day. But the baby went into congestive heart failure so instead steroids were given and a c-section scheduled.

We managed to hold off for 48 hours. Brendan was born weighing 1 pound 12 ounces but a lot of that was fluid. No one knows exactly how much he weighed after losing all the fluid. He was completely swollen everywhere to the point his skin was just breaking open in spots. He was placed on a ventilator. He was taking no breaths on his own at all. He was started on an exchange transfusion right away. His hemoglobin was 3.5; normal is 15. His nervous system was very immature. At 2 days old he had to be switched to a different ventilator because his lungs were being damaged from the amount of support he needed, and the same day they did a scan and found he was having a small brain bleed. His eyelids were still fused closed, he was too young for feedings so he got TPN and fat. He was 12 inches long and I couldn't touch him or talk to him. At about a week old he had pneumonia and a suspected sepsis infection. At this point he had less than a 10% chance to survive. He had too many transfusions too count. He had many other problems that are too many to list.

I held him for the first time when he was 21 days old, the same day he came off the ventilator. Up until that point I sat by his bed and cried on a daily basis. I was scared to get attached, I was afraid he wouldn't make it, I wanted to tell the world I had a baby, I didn't want to answer anyone's questions, I wanted to ask why, I was afraid things would get worse if I doubted why, I wanted to love my baby, but I was scared to death. When I held him in my arms I was his mother and knew without a doubt that I did love him all along and it was okay to be afraid. He developed reflux, ROP, and double hernias. The most worrisome was his reflux because despite the medication he would have drastic heart rate drops from it. He also couldn't get off the oxygen. So I made up my mind that I would learn and do as much as I could. I did and brought him home at 74 days old.

He was still very fragile and sick but I was doing all the care that the nurses were doing and he did everything better for me including eating. And because I had three other children at home I couldn't stay there 24 hours a day so they let me bring him home. He came home on a monitor and his oxygen and two days later I was doing CPR on him. Thank God the NICU did such a good job making sure I knew exactly how to do it right because it worked. He was on a ton of medications. We went through 20-some medicine syringes every 24 hours and they had to be given every four hours around the clock. He had chronic lung disease.

Brendan is now 20 months old. He has asthma, allergies, a history of lung problems and is very delayed in everything. He sees a neurologist and a team of therapists every four months. He gets physical therapy weekly and has a private preschool teacher come into our home from a special needs school. He had periodic checkups for ROP. He was in the hospital this past winter with RSV and had a partially collapsed lung from it. He will have more therapies to follow. He can take up to four very wobbly steps sometimes and can't talk yet besides "mama." His cognitive development and speech are that of a 6-month-old at this point. He still has some other problems too. It's okay though because for a kid who had less than a 10% chance to survive, I think he is doing absolutely wonderful. I don't care if he's not a future president, although I will sit on my hands and push him to be all that he can. You never know, he has surprised us so far. He is our miracle child and I wouldn't trade him for anything and neither would his brothers and sister.

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