Gabriel Ray’s Story
Gabriel Ray Gannaway was born on Tuesday, March 24, 2009 at 9:39 AM. He weighed 6 pounds and 2 ounces and was 18 inches long. He was born with some physical disabilities, but they have not stopped him from being amazing. :-)
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Gabriel's Story: The Summary
During the 17th week of our pregnancy, we received the scarriest news possible. Our baby would very possibly die inside the womb or be born with major physical disabilities. I had a very rare condition called Amnion-Chorion Separation. This is when the membranes inside the amniotic sac do not form correctly. Essentially it makes the amniotic sac two separate sacs, one inside the other. The most bizarre part of this is that our baby's legs were outside the inner membrane. Despite being referenced to the top high-risk doctors and hospitals in the area, not one doctor had ever seen this before. Very few had even heard of amnion-chorion separation by reading about it in medical books. Noone knew what was going to happen, noone could do anything about it without risking the life of the baby, and our chances were very slim for the baby to survive overall. So we prayed for a miracle.
By week 20, the situation changed; the baby broke the inner membrane. This meant that the particles of the inner membrane (which are like translucent, sticky, guitar strings) were now floating around the baby. These were very dangerous and could have tied around any part of the baby at any time. This is called Amniotic Band Syndrome (ABS). So we prepared for what seemed to be a very probable situation; having to take out the baby very premature. I had every test imaginable during the pregnancy including 3D and 4D ultrasounds (3 times a week), a Fetal MRI, and Genetic Blood Testing. I also received 2 rounds of steroids to help develop the baby's lungs in case of early delivery. There were many weeks that I was in a doctor's office every single day. I documented all these visits in the "Journal" to keep everyone informed. And we prayed . . . A LOT.
By 37 weeks, we had decided to take the baby out via scheduled C-Section. It was the safest way and he was developed enough to survive outside the womb without major complications. So little Gabriel Ray was born on Tuesday, March 24 weighing in at a little over 6 pounds. In the operating room, we had many high-risk doctors including the head of the Neonatal team, the on-call pediatrician, and an orthopedic surgeon. Despite all the testing, we didn't know exactly what we were going to be dealing with. Luckily, it turned out that all of Gabe's problems were totally fixable.
Gabriel was born with bilateral dislocated hips, a club left foot, missing parts of 2 toes on his left foot, amniotic band marks on both his thighs directly above his knees, and an amniotic band mark on his big toe on his left foot. He also had a slight heart murmur when born, but that went away quickly.
Overall this was truly a miracle. God had answered our prayers.
Gabriel spent the first day with me in my hospital room, but was then taken to the nursery to be placed under photolights due to jaundice. That was very hard for me when they took him away. But I still got to see him and feed him every two hours. On the day of my discharge, Gabe only weighed 5 pounds and 6 ounces, which meant he had to take the car seat challenge (required by law for small babies to make sure they can handle a normal car seat). He failed the car seat challenge due to apnea (periods where he would stop breathing). This landed him in the Neonatal Intensive Care Unit (NICU)for 6 days and meant we had to take him home in a car bed with a breathing monitor when he was released. The day he was taken to the NICU was definitely the hardest day of my life. It was horrible leaving the hospital without my baby.
Over the next months, Gabriel progressed wonderfully. He met every challenge presented to him. We went to many amazing doctors for his physical disabilities. They all love him. He is a very sweet baby.
On Tuesday, August 11, Gabriel had his first surgery. His plastic surgeon corrected the band marks on his legs and the orthopedic surgeon corrected the club foot. On Wednesday, September 9, Gabriel had his second surgery. During that surgery, the surgeon fixed his left hip. Surgery #3 was on Wednesday, September 30 and attempted to correct the right hip. Unfortunately, the procedure on the 30th did not work and Gabriel had surgery #4 on Wednesday, October 21. Surgery #4 was essentially a repeat of Surgery #3.
Gabriel has also been evaluated for physical therapy through the Infant and Toddler Connection of Fairfax County.
Please continue to pray for Gabriel and to keep posted for new developments.
Update 3/23/2014! 6 Years Old Tomorrow! :) Wow! It's been a crazy ride. I can't believe that I started this journal over 6 years ago now. Since the summary was updated last, Gabriel had two more surgeries when he was 4 years old. One was to release the amniotic band mark around his left foot big toe. This was a very successful surgery. The second surgery was to move the tendon on his left foot from the inside of his foot to the outside of his foot. Also very successful. :) Gabriel runs, jumps, and plays just like any other 6 year old little boy. He is very happy and healthy. He continues to have breathing issues and is on daily asthma medication, but in relation to everything we have been through this is nothing to us. :)