Ayden is my second (of 4!) child. I was 21 years old when my husband and I found out we were having him. Due to insurance issues, I didn’t see a doctor until I was around 12 weeks pregnant. Even so, everything seemed fine! We had our 20 week ultrasound and discovered we were having another boy! Still, everything looked great. Somewhere along the line I developed gestational diabetes. Of course it doesn’t sound like a good thing, but I consider it a blessing now. I began being followed by a maternal and fetal medicine specialist as well as my OBGYN.
Around 34 weeks, the MFM scheduled an ultrasound to check the baby’s weight because babies of diabetic mothers tend to get bigger faster. Without the diabetes, I would not have gotten this ultrasound and we wouldn’t have been prepared for Ayden’s condition. I remember being so excited to get to see our baby again! Lying on the table, it didn’t take long for me to realize something was wrong. The normally chatty UT was silent after a few minutes. She got up and left the room without saying a word, and came back with the doctor. They pointed at the screen and whispered for what seemed like an eternity. Then the doctor turned to us with half smile and said “Sorry about that. There seems to be what looks like a cyst in your baby’s head. My world stopped and my heart sank. We left the room and the doctor explained further. He said it was, as far as he could tell, an arachnoid cyst. No big deal really according to him; usually harmless, totally treatable. Still, this was MY baby! He said he wanted me to come back for a 3D ultrasound the next week and in the meantime he would schedule a fetal MRI at a local children’s hospital.
After my MRI, I was to meet with a neurosurgeon there. I went home and researched everything I could on arachnoid cysts. What I found seemed to corroborate with the doctor’s story. Not the end of the world. I could handle this. Everything would be fine. I had the MRI, and left a note with the neurosurgeons secretary as she was out of the building when I stopped by. I waited for her call. When it finally came the next day, I was in no way prepared to hear what she had to say. I only remember fragments, but some of it I will never forget. “Your baby is missing parts of his brain…he will most likely be paralyzed on his left side at least, if not completely...he may never speak…will probably be severely handicapped…of course these are worst case scenario’s, but we rarely see much better with this condition…I really don’t know why they sent you to me, I can’t fix this.
The only reason I can think of is that once he’s born he may require a shunt to drain fluid from his brain.” They sent me to her because from ultrasound they assumed that my son had an arachnoid cyst. What he actually had was a porencephalic cyst, which also caused partial agenesis of the corpus callosum. This cyst was not in the membrane AROUND his brain like I was told. It was IN his brain, just occupying space where brain tissue should be, but was not. I was 21 years old. I had taken an anatomy class in high school and grew up with a nurse for a mother, but that was the extent of my medical knowledge. How could someone even LIVE without parts of their brain?! I still hadn’t heard the “H” word at that point.
Ayden was born at 11:11 am on February 23rd, 2006. He was delivered by planned C-section at 37 ½ weeks after an amnio showed mature lungs, and we were as prepared as we could be. We had already met with the neonatologist and he and his team were in the operating room waiting for our little guy with us. We were at the best hospital in the area with the highest level NICU. Still, I couldn’t help feeling an impending sense of doom. It took all of half a second for Ayden to fill the huge room with his monstrous screams. Of course, he was perfect. He was even allowed to stay with me on the way down to recovery and visit for a few minutes. Then they took him, and I wouldn’t get to see him again until around 11pm when they were fed up with me throwing a fit and allowed me out of bed to visit him. He was in the Special Care Nursery (not even NICU!) and was hooked up to lots of monitors, but nothing else. The next day he went for his first MRI on his own and a head ultrasound. Aside from a little bout with jaundice, his first three days of life brought nothing eventful.
After we found a pediatrician (our current was a family practitioner and very honorably admitted that he didn’t feel comfortable caring for Ayden and preferred that we find an actual pediatrician) and scheduled an appointment with the neurosurgeon, Ayden was cleared by the neonatologist and neurologist to come home on day 3. Ayden was born on a Thursday, went home on Sunday, and had his first appointment with his pediatrician that Tuesday. At that appointment his head measured 36.1 cm; a little on the large side, but not terrible. He had his appointment with the neurosurgeon one week later. At that appointment his head measured 40cm. It had grown nearly 4 cm in a week. The NS kept checking and rechecking. She even called the doctor’s office to make sure the paper I had with his measurements was right. She came back and tried to relay as best she could what hydrocephalus was and what it meant for Ayden. I’m pretty sure I heard nothing she said. I was given a pamphlet that appeared to date back to the 80’s and sent home with a promise of surgery.
Ayden was diagnosed on Tuesday and had his shunt placed on Friday, March 10th 2006, at just 15 days old. I was a wreck. I remember speaking with a nun who was volunteering in the surgical waiting room. When I told her the surgery my son was having she started telling me how she was a nurse in the 1940’s before there were shunts and how many children died as a result of hydrocephalus. I know she was trying to help, but that wasn’t a conversation I wanted to be having at that moment. Knowing all that I do now about this dreadful condition, I wish I had taken time to listen to more of what she had to say.
Ayden’s shunt functioned properly for a little over 3 months. He had his first revision in late June. In August we were back. He had an external drain placed for a few days and then another revision. While knowledge of the wrath of hydrocephalus leads us to believe that the list will go on, this is where Ayden’s stops for now. He endured 4 surgeries before he was 6 months old, but has been surgery free for nearly 6 ½ years. I KNOW that there is virtually a ticking time bomb in his head, but a girl can dream can’t she?
We are extremely lucky, however, in that Ayden is nearly unscathed by any of his diagnoses. He is a fighter. I remember after every surgery he was always bright eyed and so alert after only a few hours. After one I remember carrying Ayden down the hall coming back from CT to find the NS and her whole group of students ( in their residency I guess, it was a teaching hospital associated with the local university’s school of medicine) standing in Ayden’s doorway waiting for us. She said she wanted them to see how resilient he was, always seemingly unphased by surgery. Today, he basically owns the 1st grade! He even gets to choose his own spelling words out of the dictionary because his teacher realized that he already knew all the 1st grade words. He says things sometimes that amaze me, that are beyond what any child should know or understand. He has a natural ability to be funny. He says quirky things that have come to be known as “Aydenisms,” and it’s something new nearly every day.
What he does struggle with, we are working diligently on catching early. He has very minor balance, coordination, and left sided weakness issues, only discernible by a physical therapist, and we are watching what may develop into a learning disability, but we won’t know until he’s older. I go days sometimes forgetting everything in Ayden’s past and the fact that he relies on a device to keep him alive and well. Another appointment with a doctor or therapist, or a glimpse of his scars always snaps me back to reality. I definitely realize how lucky we are. He is all in all a happy, healthy, thriving, almost 7 year old boy, whose larger than life personality inspires us every day.