Lucy, 17 months

My entire pregnancy and all my scans were unremarkable and we had no indication of any issues whatsoever. Lucy was born on 3/18/16 with a large, but “average” sized head at the 95th percentile. We thought nothing of it, but I remembered wondering why the newborn hat I had picked out for her coming home outfit fit her funny. But she was perfect and beautiful!

We had issues with breastfeeding in the beginning so we kept going back to the doctor for weight checks. By her 2nd week, she was breastfeeding like a champ and had gained back her birth weight so I remember being so relieved and thinking we were done with doctor visits. Then during the routine measurements, the doctor had mentioned that it seemed like her head grew an inch since birth. She thought that they must have measured her head wrong at the hospital. But as a precaution, she asked us to come back in two weeks for another head measurement. I was so confused and nervous! Those entire two weeks, I obsessively watched her head and was in denial that something was wrong, but when I took her pictures, you could definitely see that something did not seem right. Also, she was not the typical baby. She breastfeed great, but did not seem to move her head around or look around. We ended up taking her back to the doctor 10 days later because we knew something was definitely wrong.

When we took her back, they measured her head again and told me that her head grew another inch. So in a little less than a month’s time, her head grew two inches. The doctor briefly left the room, and when she returned, she told us that she had made a call to the neurosurgeon in Hershey and we had two options: to go directly to the ER where we would most likely be admitted, and that way they could do the scans tonight and the neurosurgeon would see us early the next day; or we could make an appointment to see him in his office this week. I asked the doctor what I should do, and she said that if it were her child, she would go to the ER. So off we went, I was crying the whole way, and so nervous and scared for her. I was wondering how this could happen, when I took such good care of myself throughout my pregnancy, where did I go wrong?

When we arrived they admitted us and told me to stop feeding her, and we waited 4 hours to do the MRI and they also did a CT scan. They then told me that results did find “severe hydrocephalus” and that we would be admitted. I asked if she needed surgery, and they said yes. They gave me a pump and admitted us to a room. They told me I could feed her since the surgery wasn’t scheduled yet. The next morning the neurosurgeon arrived and confirmed the diagnosis, told us it was Aqueduct Stenosis, and scheduled us for his first surgery the next day. He discussed the shunt and ETV procedures, but said that in her case he preferred the shunt because the ETV had a lower success rate in infants. I was so scared but him and the nurses really took the time to explain everything and reassure us that she would be okay, and everything would be fine.

The next day they took her around 7am and the wait at the waiting area was agonizing but around 930, the doctor came back and told us that the surgery was successful. When she woke up, she looked right at us and we couldn’t believe the immediate changes already. We often look back now and say that she was born again after the surgery. After that she was more engaged and active. We were released just 24 hours after the surgery and had follow up appointments with our pediatrician and neurosurgeon. We immediately started early intervention and she qualified for PT.

A year later, we are revision free and she is doing wonderful. She is meeting her milestones and being released from early intervention. She continues to be closely monitored by her pediatrician and neurosurgeon.

We are so grateful for Dr. Love at JDC Pediatrics for being so quick to see the signs and handling it so well, for Dr. Iantosca and all the nurses and staff at Penn State Hershey Children’s Hospital for the wonderful care Lucy received while we were there. We feel so blessed that she had access to these medical interventions that allow her to live a normal life and we continue to pray for her health. God bless all Hydro Warriors out there, and thanks for letting us share her story!

 


Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

Let’s SHARE. Let’s CONNECT. Let’s raise AWARENESS! Let’s INSPIRE!

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

Become a Grassroots Advocate for Hydrocephalus today! Click here to join the Hydrocephalus Action Network.

 

Change this in Theme Options
Change this in Theme Options