At our 20 week ultrasound, we had the infamous ultrasound where we would find out if we were having a boy or a girl. We were told we were expecting a baby boy! We were so excited! But a few hours after leaving the doctor's office, I received a phone call telling me something didn't look right with the baby's head and they suggested we see a high risk doctor. Another ultrasound was done and we were told our baby had a rare neural tube defect called an encephalocele. We were told this was a condition where the bones of the skull do not close completely, creating a gap through which cerebral spinal fluid and/or brain tissue can protrude into a sac-like formation. We were told a lot of babies don't make it to term and a large percentage of the ones that do are stillborn. We were also told that it looked like his heart MIGHT be hooked up backwards. They said when they see encephaloceles they're not usually isolated; a lot of times they see other conditions with it, which lessens the chances of a positive outcome.
We were told if he survived, his quality of life was unknown at this point but it was quite possible that he could be a vegetable. We were offered termination. We were devastated, how could this happen to us?! We did EVERYTHING possible for a healthy pregnancy and baby. We saw a cardiologist who did a fetal echo and we were told his heart was hooked up normally! We took this as a positive sign. We chose to continue the pregnancy. We had a fetal MRI at 32 weeks, where it was suspected that Dylan also had Dandy-Walker Syndrome (rare congenital brain malformation involving the cerebellum & fluid spaces around it). The last 4 months were very stressful; Dylan was monitored closely, his encephalocele did get a little bigger as he grew but we were told that it appeared to contain only fluid (and not brain tissue also); we were told this usually has a better prognosis but doctors were still reserved.
Finally the big day arrived; Dylan was born by a planned c-section on March 16th, 2010. We only got a glimpse of him before he was whisked away to NICU. We were just happy that he was born alive and was able to breathe on his own. The next 15 days were the longest days of our lives; he spent the days in NICU having every possible test and scan run on him. The suspected diagnosis of Dandy-Walker Syndrome was confirmed at birth with an MRI. He was also diagnosed with mild hydrocephalus and had surgery, placing a VP shunt when he was only 8 days old. He was also born with deafness in the right ear, fused rib bones and Klippel-Feil Syndrome (rare congenital disorder of abnormal fusion of cervical (neck) vertebrae).
He had some feeding issues while in NICU and he was on a feeding tube for awhile. But FINALLY the day came that we got to take him home, no feeding tubes, and no extra equipment! Ultimately we decided it was best that I leave my job where I had been employed for the last 11 years, to stay home with Dylan full time. It has definitely been an adjustment, but it is the best decision I ever made. Dylan didnít have surgery to repair the encephalocele until he was 6 months old and he has had numerous surgeries over the two years of his life.
Dylan is the happiest little boy ever; we like to call him abnormally happy. Today, he is a happy, highly intelligent 28 month old who loves cars, balls and Elmo. He has defied so many odds and continues to amaze doctors, therapists and people every day!
He was definitely a life worth saving; he is our little miracle baby and we are so lucky to be his parents!