Meryl, 2

Meryl today!

When we found out in August of 2014 that Amanda was pregnant with our first child, we were elated. All early appointments with the Obstetrician went well, and the initial ultrasound showed nothing of concern.  We both looked forward to the 20 week anatomy ultrasound and gender reveal.  We found out we were having a little girl, and almost everything looked great.  The doctor saw a small calcium deposit on one of Meryl’s heart valves, which could be an indicator of certain health concerns, so they scheduled us for a 26 week ultrasound to re-check the area and sent us on our way.

For the next month and a half, we rejoiced in the miracle of our first pregnancy, but the gnawing feeling that our baby could possibly have some health issues was always at the back of our mind. The 26 week ultrasound started off well; the small spot on her heart valve had nearly vanished. However, two of Meryl’s brain ventricles were about 50% oversized.  At the time, we didn’t know the body had ventricles outside of the heart, much less what a set of over enlarged ones would indicate.  The doctors scheduled us for a follow up ultrasound at 30 weeks to further investigate.

At this point, we were both fairly apprehensive, but tried to stay confident that everything would work out.  When we returned for the follow up, it became quickly apparent that something was wrong.  Meryl’s ventricles had increased to 250% of the size that they should be, and there was evidence of some debris, which could have indicated a stroke. We were being seen at a relatively small hospital that had a fetal health specialist, but no pediatric neurosurgeon, so we were referred to the University of North Carolina at Chapel Hill, where we met with a great team of doctors, nurse practitioners, and patient advocates who did a fantastic job of laying out what we knew, didn’t know, and could expect to find out about our daughter.

The team suspected that hydrocephalus was caused by aqueductal stenosis; Our daughter’s aqueduct connecting her ventricles was only 1-2mm when it should have been 4+mm.  As a result, it likely got clogged and stopped circulating cerebrospinal fluid, which caused her ventricles to enlarge.  Regardless, there was nothing that could be done until she was born, which doctors expected to result in a NICU stay and potential emergency brain surgery.

The next 8 weeks passed slowly with unavoidable worry. We scheduled a cesarean delivery, because Amanda’s obstetrician team believed that Meryl’s head circumference was likely too large to be born naturally. That, coupled with the added pressure of the birth canal on Meryl’s brain, could have caused additional damage.  Regardless, Amanda went into labor early and Meryl was born on March 20th, 2015.

We are pleased to say that everything went as well as an emergency cesarean of a baby suffering from an incurable brain disease could go.  Meryl was incredibly responsive, healthy, and appeared to be in no immediate danger.  Instead of a lengthy stay in the NICU, we were allowed to go directly to a mother-baby suite for 4 days while Amanda healed from her surgery.

When she was 3 days old, Meryl had her first MRI that confirmed aqueductal stenosis as the cause of her hydrocephalus.  Her ventricles were still extremely enlarged, but she did not appear to be in distress.  We were discharged from the hospital with weekly checkups with Meryl’s pediatricians and neurosurgery team.  Over the next 5 weeks, she gained her strength and developed from a lethargic newborn into an active infant.

This newfound strength made shunt placement surgery much more feasible and attractive.  We knew that her ventricles were still under pressure (she had a full yet soft fontanelle with no apparent coronal sutures) and would inhibit her brain grown unless that pressure was relieved.  Of course, we were very apprehensive about the upcoming surgery, but knew that it was the best path for our daughter.  We had full confidence in the experience and capabilities of our daughter’s neurosurgical team.

After the hour-long surgery, Amanda and I were brought back to the recovery room to see our little 5 week old daughter, still groggy from anesthesia, but obviously hungry. Her now sunken fontanelle and sutures indicated the surgery had been a success.  Her surgeons reported that there had obviously been a pressure buildup, now relieved, and her brain would most likely grow and develop in the way that it should.

Meryl turned two just over 2 months ago.  She is an incredibly smart, active two year old with a great sense of humor.  Her vocabulary is exploding, and she appears to be meeting all of her developmental milestones.  Since the surgery, Meryl has had two additional MRIs that have confirmed that her ventricles are back at the size they should be, and her brain matter is filling in the previous void.  She is so full of life!

Of course, the fear of a shunt failure or emergency surgery is always in the back of our minds.  Every fussy day, headache, or vomiting episode is met with a sense of apprehension.  It’s something that we’ll live with for the next 16 years, and Meryl will live with for the rest of her life. But, for right now, Amanda and I enjoy our days with the perfect little girl!

Meryl right before surgery

Meryl post shunt surgery at 5 weeks old

Tell us about your journey with hydrocephalus!

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If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

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