Fighting for Grace, Born with Hydrocephalus

At 18 weeks we went to the imaging center to find out if we were going to be having a little girl or boy! Little did we know we would get a very different kind of result.

That day, not only did we learn we were having a beautiful little girl, but also that she was diagnosed with Severe Hydrocephalus. Our hearts were crushed, we never heard of this before and were scared. After meeting a wonderful woman Mariratina, who was the director of a local pregnancy center, we gained HOPE. We went to the MFM a few times and learned more about the condition. Our doctor there was very helpful however one visit he was out delivering a child so we saw his colleague instead.

The other doctor that didn’t know anything about us coldly told us “You need to terminate the fetus, it WILL be severely mentally and physically handicapped.” Thank god we did not listen and a few months later I gave birth to the most precious girl. She had a few problems in the beginning but after surgery she was doing great. The first year was a nightmare, we had numerous doctors visits, hospital stays, and she had 6 brain surgeries.

As a parent the journey was overwhelming, upsetting, stressful, painful, etc. However that beautiful little face and smile and HER strength kept me going. She fought through EVERYTHING that was dealt to her. My beautiful little Grace just turned four years old this month. Most people have no clue anything is wrong with her.

She suffers with learning disabilities, short term memory loss, seizure disorder, cross eye/poor eye sight, ADHD, and a few other minor problems but nothing she can’t overcome. She is the happiest child I have ever met (except when she’s having her mood swings which I believe is caused from her seizure medication.) She steals the hearts of everyone who meets her, and spreads more love than any child I have seen. The journey ahead will not be perfect, however its much more promising than anything i could have imagined after what we were told in the beginning.

There is no cure for Hydrocephalus however it is treated with a shunt which is implanted in her head to drain the excess fluid around her brain. She sees a neurosurgeon once a year, a neurologist 3-4 times a year, shes about to get her 3rd pair of glasses for her eyes but will probably end up having surgery to correct her cross eye this year. She went through 2 1/2 years of physical therapy which has helped her tremendously to hit her milestones and RUN like any other normal four year old.

I have a facebook page for her because we want to spread awareness. I also recently made a poem about her journey from my standpoint as a parent in hopes to reach out to people, and thankfully we did reach out to ONE mom who was pregnant with a little girl that had the same condition as Laila. It was so amazing to be able to talk to someone who is at the same point I was 4 years ago. My goal is to help ANYONE dealing with a similar situation and to encourage them to let these amazing children decide there own future, not a doctors “opinion.” I had a guide that I will forever be thankful to, and I hope that I can do the same for others. Laila has changed my life in so many ways, and i wouldn’t have it any other way.

March is the Month to Share YOUR Story!

Do you or your child have a rare disease? We want to hear your story. This month we celebrate all patients and their families who speak out on behalf of their condition to raise awareness, connect with others and inspire the community. Make sure to share your story with us by writing to us here.