It was 4 years ago now, but I remember it like yesterday. I remember being in the OB/GYN's office and having a 2nd ultrasound done at 10 weeks to check the heartbeat. We were being extra cautious because I had just had a miscarriage a month before. My doctor knew immediately that something was wrong. She could see a very enlarged bladder inside the tiny baby. She tried to keep things calm, but sent me to see a specialist immediately. I can remember going home after the specialist and looking up the different possibilities on the internet. None of it looked good. The survival odds were terrible. Over our many months of weekly ultrasounds we were told so many horrible things - that he might have Down syndrome, that he might have another chromosomal abnormality that was incompatible with life, that he would have kidney failure, be on dialysis, may need a kidney transplant or may not live long enough to receive one.
Thankfully we found out through a biopsy of the placenta early on that he had no chromosomal abnormalities and that he was a boy. It was a relief, but it was still impossible to relax. We were sent to see all the specialists before he was born so that we could be prepared for what may happen after his birth. They told us about what happens in the NICU and what happens when the baby doesn't live. The nephrologist told us about how it would be when he was on dialysis and how big he would have to be to receive a transplant. Lastly, we saw our urologist, whom we have grown to love over the past 4 years. I sat there 20 weeks pregnant while he looked at our ultrasound pictures. We were on information overload after the previous 2 consults. He just looked at us and basically said that everything would be okay, and he thought we were going to have a great kid. He was a gift from God. We needed that encouraging word. It gave us hope.
We had weekly ultrasounds, but basically made it though the pregnancy uneventfully. At one point, his bladder was so distended, that we thought we might have to do some sort of intervention. Then miraculously the next week the bladder was totally deflated. We had no idea what had happened, but we were so grateful because this would give his lungs a better chance to develop. We were always wondering how much kidney function he would have, if any, and would his lungs be developed enough for him to survive.
At 35 weeks, the real adventure began. We went to the specialist for our routine appointment. The doctor watched the blood flow in the placenta and umbilical cord way too long. You just know when something isn't right. He didn't think the placenta was functioning well anymore, and told us to go straight to the hospital to deliver. We came to find out later that as much as 80% of babies with Middle-G's condition are stillborn. It was just another miracle that our doctor got us to deliver in time.
At the hospital I was induced, and Middle-G made his appearance in the morning. It was a beautiful delivery, didn't even have to push once. It was all such a blur after that. He had more physical defects that we knew about from the ultrasound. We came to find out that the reason his bladder deflated was because it ruptured out the front of his abdominal wall. He had a hole in his abdomen, and you could look inside and see his organs. They put his lower half in a plastic bag to keep him sterile, wrapped him in a blanket, and I got to hold him for a few minutes before they transferred him to the children's hospital. I can remember having 2 guys from the ambulance service come in and have me sign papers for transfer. They said they would take care of him.
It was a weird feeling sitting there by myself in the hospital for the rest of the day while my husband was consulting with all the surgeons and specialists. It wasn't until late in the evening when my husband finally returned, and I learned all that had happened and would happen in the morning. It hurts to even think back and remember that night. I wouldn't wish it on my worst enemy. My doctor let me be discharged before the sun rose the next morning, less than 24 hours after the birth, so that I could rush to the hospital and make it before my baby went into surgery. I had only held him for a few minutes, but I still cried when they wheeled him away. I had no idea what the future would hold for him.
Needless to say, we survived that surgery and many others after it. His doctor has said that there is no other child on earth with the same constellation of defects. He is truly a 1 of a kind. It hasn't been easy at all, but every experience has been a blessing. We have learned more about ourselves and our God than we could have ever imaged. When something like this happens in your life, you can't deny the hand of God moving over and over again. Many children in Middle-G's situation do not live past the age of 2. We were so overjoyed when he reached that milestone. Now at 4 years old, he's as vibrant as ever. His physical condition is better than we ever could have hoped. Never has there been a more energetic, animated, and affectionate child. He means the world to everyone in this family, and I hope someday he can really understand how much God loves him and did love him even before he was born.
HAPPY BIRTHDAY GRAHAM!
