Hydrocephalus & The NICU

After a baby with hydrocephalus is born, they will go to a NICU [Neonatal Intensive Care Unit], where they will recieve any and all treatment needed, including initial shunt placements.

This is a slightly modified transcript of a talk I gave as part of my Gold Award

I was in the NICU for six weeks to be treated for hydrocephalus, as I was diagnosed in utero at 26 weeks. I underwent 2 surgeries while in NICU after shunt placement. My brother, Zavyer, who also has hydrocephalus, was there for one week. He was diagnosed at 20 weeks in utero.

I have congenital hydrocephalus, meaning I was born with it. I have had 7 surgeries/revisions, which includes the initial placement of my shunt. My most recent shunt malfunction when I was 9, and had multiple mini-strokes. I was in therapy for 2 years as a result, including physical, occupational, speech, and vision therapy.

Now, I’m in 11th grade, am an active participant in Girl Scouts. I am also an AP and honors student, in the 2nd highest level of my orchestra, and am part of Encore Theatre.

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What Do Babies Need In The NICU?

They need their parents. Be involved as much as possible in their care. Touch them and talk to them because they need the sensory input of hearing and touching people. You can bring books to read to them. They also need to be comfortable, so you can place a blanket with your scent (sleep with it) in their incubator to get used to you. The more time you spend with your baby, and the more interactions you have with the nurse, the more you will learn about your baby (cues of feeding, sleeping, getting tired, and personality).

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How Can I, A Parent, Feel Less Stressed?

Pay attention to your own needs, and those of your family, especially if you have other children. Turn to other parents of NICU babies for support or join a support group. This way, you can share your feelings, worries, and triumphs together.

Do something for yourself. This can be as simple as listening to your favorite music, or drinking a favorite latte.

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Closing Tips

Make a notebook or binder of all of the information about your child. This includes doctors visits, medical history, and all lab work and imaging/scans. This notebook can be digital, or an actual binder.

I would suggest using a large binder or a digital service such as Evernote or your smartphone’s Notes app. This is convenient when traveling and while dealing with insurance. You can be a better advocate for your child in this way. This is also helpful when filling out doctor forms.

Create a document of questions for the doctor at each visit, along with their answers

This way, you can be informed about your child’s health for the next visit, and you can relay information from one doctor to the next.

~ Leyra