Our Story

After 3 years of dating, Matt and I were expecting our first child. After overcoming the surprise of becoming parents, we were struck with the news that the little boy we had been anxiously waiting to meet was diagnosed with hydrocephalus. Our lives changed forever that day, but only for the better. If you have come across this page as a hydro mom-to-be, I hope our story will give you hope and the courage to continue your fight. These are the details of our journey.

PRENATAL
25 WEEKS - After being referred to a high-risk obstetrician, we went for a Level II ultrasound to confirm our midwife's suspicions. Our doctor gave us a grim outlook and offered termination. We knew this little man would be a fighter and weren't going to give up. The left ventricle measured 27mm and the right 26mm.

26 WEEKS - I had an amniocentesis (the sampling of amniotic fluid using a hollow needle inserted into the uterus, to screen for development abnormalities in a fetus) to rule out any genetic issues. All tests came back negative and we are left with no answer.

27 WEEKS - L36 and R30 (this was a fetal MRI)

28 WEEKS - First visit with our pediatric neurosurgeon to discuss a birth plan and surgery. He suggests a c-section at 32 weeks and it will be likely that we shunt Cohen 2-3 days post birth, depending on his progress.

31 WEEKS - Our OB decides 32 weeks is too soon to deliver, we aim for 34-36 weeks. L42 and R34

32 WEEKS - L46 and R36

33 WEEKS - Our neurosurgeon and OB have been trying to plan Cohen's arrival, week 34 is Memorial Day weekend and the neurosurgeon is out of the town week 35, so it has been decided! Cohen will arrive at 36 weeks on June 2, 2014. L47 and R40

After week 33 the ventricles were so large they could no longer read an accurate measurement, however I continued my ultrasounds weekly and began non-stress tests. Talk about the most boring 20 minutes that frequently lead into an hour! I also had steroid injections to help mature Cohen's lungs. Because he came as a surprise, along with his overly large head, we were not exactly certain how old he was. It was crucial that his lungs were as developed as we needed them to be.

BIRTH & SURGERY #1
Cohen Eli was welcomed to the world via c-section on June 2, 2014 at 9:19am, weighing 6lbs 14oz and measuring 18in long. Thankfully Matt was able to be apart of this special moment and we briefly got to see Cohen before he was whisked away to the NICU (neonatal intensive care unit). He was healthy as could be, but did have a little trouble breathing and was put on a nasal cannula for oxygen. Matt and our family were able to visit Cohen shortly after he was taken to the NICU, while I had to recover. Thankfully everyone sent me pictures and videos. My nurse encouraged me to try standing up around 5pm and promised if I could, she would wheel me over to see my little peanut. By 6pm, I was finally able to go see him. Holding him was like a dream, he was so perfect!

Cohen's head circumference had not increased by Tuesday, so the neurosurgeon decided to hold off on the MRI until Wednesday. We were all very anxious to see what was going on. He wasn't able to go until later Wednesday afternoon and of course his neurosurgeon was gone Thursday, so we had to wait another day for the results. After a rough recovery and blood transfusion, I was discharged on Thursday. We had been hoping to stay in a Ronald McDonald sleeping room, which was only a few steps away from the NICU. However, it was completely full and we were absolutely devastated to leave Cohen overnight alone. We got back to the hospital early Friday morning only to receive the best news! Cohen had aqueductal stenosis, a very common cause of hydrocephalus. Aqueductal stenosis is a narrowing of the aqueduct of Sylvius, which blocks the flow of cerebral spinal fluid (CSF). This diagnosis qualified him for an endoscopic third ventriculostomy (ETV), which had us jumping for joy. An ETV is an opening created in the floor of the third ventricle using an endoscope, which allows the CSF to flow directly to the basal cisterns, shortcutting any obstruction. This also meant, no shunt! The less foreign objects, the better. Cohen's surgery was scheduled for the following Monday, June 9th. Shortly after the neurosurgeon delivered this exciting news, our social worker stopped by to inform us that a sleeping room was available. I was bawling tears of joy!

On Monday, June 9th, we handed Cohen over to his neurosurgeon. Putting your child's life into, somewhat of, a stranger's arms is the most terrifying moment a parent could ever experience. After what felt like a lifetime, we had an update. Cohen's procedure was finished and he did great! We waited outside the NICU for him to return and for the doctor's and nurses to get him settled. Our neurosurgeon came to talk with us and said the surgery went so well that it was boring. They had also placed a Rickham reservoir and ventricular catheter for ease in testing pressure or removing fluid. We were finally able to see our little peanut and as happy as it should have been, it was so heartbreaking; seeing this tiny little human hooked up to multiple machines and monitors, with so many wires and tubes coming out of every direction. He opened his eyes for a few seconds later that evening and I was so grateful to be standing by his side. Cohen was extubated the following afternoon and you could tell he was so happy.

As the week passed by, we were so ready to begin our life at home as a family. However we hit a few speed bumps because he hadn't been eating very well. We tried blaming the phenobarbital (anti-seizure medications) that he was given for surgery, as it frequently reduces appetite and takes time for the side effects to wear off. Neurosurgery discharged us on Monday, June 16th, but the NICU kept us until the 18th. Finally, around 8pm we were able to go home!! Of course when Matt went to get the car, it wouldn't start. Thankfully the parking garage had a complimentary jump start service and we were on our way. 

Only an hour after being home I had a complete germaphobic meltdown. I kept worrying that the apartment wasn't ready for our fragile little man and that nothing was clean. After a little consoling from Matt, I calmed down and was able to enjoy putting Cohen to sleep in his own crib; such a blissful moment.

SURGERY #2

Two weeks after his first surgery, a small amount of fluid began to collect around Cohen's reservoir. His reservoir is basically a little cap that tops the catheter which runs from his ventricle to the outside of his skull. At first, it was hardly noticeable, but of course it was concerning. Our pediatrician recommended that we stop by neurosurgery to get it checked. One of the resident doctors said it was completely normal in babies and should disappear in less than a month. Because they are so young and developing quickly, things are easily shifted. After a a few weeks it began to get bigger, close to the size of a golf ball. It simply looked like a little boob on his forehead. He had a check-up with one of the neurosurgery nurse practitioners (who we had never met, nor had met Cohen) and she sent us home saying that it was okay and that it should be getting smaller soon. At this point, I was becoming incredibly frustrated because it certainly didn't look "okay," but on the other hand, Cohen had been acting completely normal. When babies experience hydro complications they generally become very lethargic, have a loss of appetite, and/or vomit. On July 28, 2014, about a week and a half later, I had my postpartum checkup and decided that I needed to be the squeaky wheel. We ran up to the neurosurgery clinic and demanded that we be seen by someone. Thankfully one of our favorite nurse practitioners was available to see Cohen. After one poke of his bump, she gave us the most gut-wrenching look I have seen yet. He needed to be admitted to the PICU (pediatric intensive care unit) immediately. Of course I was absolutely terrified, but also fuming that less than two weeks prior, the other NP sent us home without any concern when his bump had hardly changed since seeing her (obviously it wasn't okay).

*[Sidebar: One of the most important things I have learned through this is that you must always be your child's advocate. You know your child best and if you feel that your doctor, nurse, or any medical staff is wrong or doubting you, speak up.]

After a sleepless night, Cohen was sedated in the morning for an MRI and lower lumbar puncture (aka spinal tap, to check his pressure level). The MRI revealed a massive buildup of fluid in his subdural space (between the brain and skull) and we were unable to continue with the LP. However, they were able to tap into his reservoir to get a reading and his pressure was a 7.5, 10 is the highest it should be for him. This was great news, but they withdrew 2.5 ounces of fluid, which is a lot for his head size. This left everyone scratching their heads, if there was a lot of fluid, wouldn't his pressure be higher? The subdural fluid collection was also a mystery. It was decided he would have an external subdural drain placed to relieve the fluid. Cohen was sedated for the procedure and they also removed his catheter and reservoir. They had figured out that the fluid was escaping around the catheter, so we needed to eliminate the cause of the issue. 

The drain was placed on a Thursday and neurosurgery wanted to keep it for the remainder of the weekend and they would decide the next step on Monday. External drains work on gravity, so if we sat him up he would drain too fast. We were able to clamp the drain for 30 minutes only twice a day in order to hold him, we didn't want to clamp him too often or else he wouldn't be able to drain. This was especially hard because while he was losing a lot of fluid it caused the pressure and air to change drastically, which was causing severe pain. The morning after the drain was placed they were able to give him morphine and after a few days, he was feeling much better. It was especially hard not having a set plan and having to go with the flow, but we had faith in our incredible neuro team. Monday came and Cohen went for a head CT, only to find that the fluid collection had hardly shrunk. His neurosurgeon decided we needed to keep the drain in for the rest of the week and on Friday he would place a subdural-peritoneal shunt. 

On August 8, we again handed Cohen over to his neurosurgeon. Thankfully this surgery was less invasive than his ETV and a much shorter procedure. Regardless how long it actually lasted, it felt like days passed before we got an update. Again, another boring surgery! A catheter was placed through the skull and dura, where his drain had been, and was attached to a Codman Hakim programmable valve and peritoneal catheter. The valve was placed behind his ear and the peritoneal catheter drained the CSF into his abdomen to be reabsorbed. In a perfect world, his shunt would drain the fluid collection and we would be able to get rid of the shunt altogether, so long as his ETV hadn't failed. However, there was the possibility that once the fluid drained and the brain began to expand back out to the skull, the ventricles would enlarge and he would need a ventricular shunt. We were discharged the following Monday, August 11. 

SURGERY #3

After two ER trips that resulted in a few days of hospitalization, but no shunt issues as expected, we made a third trip to the ER. This time we weren't so lucky. Cohen hadn't been eating well for almost a week so we made an appointment with neurosurgery on a Thursday and they ordered a shunt series x-ray. Everything checked out just fine, but the x-rays showed a gassy tummy. We figured that was the cause of the lack of appetite and did our best to rid his gas. By the following Sunday he had completely stopped eating and his fontanelle (soft spot) was bulging. Once we got to the ER they ordered a head CT, the results showed the subdural fluid collection had completely drained and his brain was expanding back out towards his skull. YIPPEE!! On the downside, the lack of pressure to press the brain inwards caused his ventricles to expand outwards and the ETV was not keeping up.