Wylie, 6 months

Wylie Quinn Sporney was born July 14th 2017 at 38 weeks. She was perfect…PERFECT.

I enjoyed my labor and I enjoyed the birth. I will never forget looking into my husband’s eyes the moment the Dr. held her up. We did it! She’s here and she’s beautiful. We didn’t have our phones to capture that moment but it will forever be photographed in my mind.  The next 3 months following her birth would be unpredictable. I hated…I mean hated people wanting to help, people wanting to stop by and people wanting to hold her. She was my baby…I did not want anyone to love her more than me. I apologize in advance new grandparents. I had a difficult time taking her in public by myself at first but luckily my mom was there to help get me out.

Like every new mom, I watch very carefully at Wylie’s development and tracked all her little milestones. As a special education teacher with 2 masters degrees I KNEW that I knew everything there is to know. I knew everything….

Let’s get to the point.

At about 3 months old, Wylie’s head grew significantly in size from 16 inches at her 2 month appointment to almost 19 inches within 2 weeks! I knew something wasn’t right. From smiling in the morning when I went to get her up to crying, and unable to lift her head during tummy time, Wylie had regressed. REGRESSED, the worse word possible to ever use or hear especially with your first baby. This baby had smiled at 5 days old and began cooing at 4 weeks old. What was going on?

I called her pediatrician to make an appointment. My husband and some friends insisted that Wylie was just growing and she may just have a big head. But a 19 inch head was off the charts according to the growth curve. The nurse that weighed her and measured her told me, “I would demand an ultra sound”. The tears came rolling.

The Dr. came in and examined her. He explained to me that it looked like she may have fluid on the brain and that she will most likely need a shunt.

WELL, my worst fears had become a reality. I knew what hydrocephalus was from researching the symptoms. The Dr. then went on to explain that he would order an ultra sound and that it wasn’t a big deal…that my husband and I would be laughing at this over coffee in a month. But I knew that Wylie may be heading into a future of multiple brain surgeries, possible shunt failures and even developmental delays. But we had to research this ourselves. He never told us. He never told us that at 2 months, her head size was already in the 99th percentile.

I was not prepared to take the diagnosis of a health condition. My perfect baby…what did I do wrong? I had multiple ultra sounds and we even did a 4D ultra sound to see her features more clearly. Nothing was ever found. Was it because of the flu I had in February? Was it because I didn’t breast feed long enough? Was it because I picked her up the wrong way?

My husband called the Dr. that night asking for him to explain the possible diagnosis. Again, our pediatrician explained it in mild terms and put us both at ease. The next morning however, Wylie was not the same even more so than before. A good friend put me in touch with a Dr. who was an expert in child development. After showing him various pictures of Wylie comparing her head growth that had happened in 2 short weeks, he recommended we go to the ER, something we were debating doing because of what our Dr. said. My husband and I both wanted to trust our Dr. We wanted to wait for ultra sound to be scheduled; we wanted to believe that this wasn’t a big deal. It was a very big deal.

After a CT scan in the ER that Saturday night, they again confirmed that yes it was indeed hydrocephalus. We were admitted into a room at Levine’s Children’s Hospital in Charlotte NC. We would then meet with the neurosurgeons Monday morning. They confirmed that the hydrocephalus was caused from Aqueductal Stenosis. They believe that Wylie has a partial blockage in her ventricle. Prior to the build up of fluid, her ventricles had been working as best as they could, but her body could no longer keep up. A full MRI at 9 months will give us more information.

Wylie received a VP shunt that was set on the highest setting to drain the most fluid so that her head could continue to develop and grow, as it should. It was later turned down to drain less fluid at a time. The days spent in the hospital were terrible. My baby had brain surgery and she wouldn’t and couldn’t eat. She cried from pain and had various reactions to the medication given to her. Wylie never even had her first cold yet. Family members and friends remained very confused about her condition. It was from that point on that my husband and I would make it our mission to educate others on hydrocephalus. One important fact that we have learned is that hydrocephalus affects every person and every baby very differently. Reading stories online probably wasn’t the best idea at the time.

Wylie is home now and doing just fine. Her head size has come down drastically and she continues to meet all her milestones. Her doctors believe that she will have no developmental delays due to only having 30% fluid built up at the time of the blockage. She is almost 6 months and of course, she is more than perfect. We work every day on tummy time. She has gained her neck strength back and now has total head control. She is alert, laughing and babbling. The most difficult part of this was not only coming to terms with our new baby having a “condition”, but realizing that as parents, we have the right to question the experts…the expert that was supposed to take care of my daughter and answer my questions…her pediatrician. Why would he not urge us to go to the ER? Yes, I understand with a 3 month old that their head has room for expansion related to the fluid, but why would I risk her having a seizure potentially or loosing even more motor skills? It doesn’t make sense. That’s because his suggestion to us to wait for an ultra sound was poor. Wylie’s surgery was October 23rd 2017 and her ultra sound that was ordered by the pediatrician was scheduled for November 9th.

The Charlotte WALK to End Hydrocephalus was the same weekend Wylie was discharged.

My advice to new parents is to fully accept that you know your child best…not your mother, not your in-laws, not your friends, but YOU. Follow and trust your instincts. Question your doctors. Do not take a mediocre response when it comes to your child.

Wylie right before surgery

Wylie right before surgery

Wylie at 5 months old during recovery

Wylie at 5 months old during recovery

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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