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What I would of told myself 4 1/2 years ago

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  • What I would of told myself 4 1/2 years ago

    If you are reading this then you probably just found out that your unborn child was diagnosed with Spina Bifida. You are scared, not sure what to expect, and uncertain what to do. You are afraid of the uncertainty that lies ahead of you. I am making this post to tell you our story, in hopes that whoever you are that is reading this, that it gives you comfort in knowing what lies ahead of you.

    Around 4 1/2 years ago at 18 weeks pregnant we found out that our son had Spina Bifida, L4-S1. We went searching for any advice, help, anything at all. We came across this forum. The individuals here are amazing and give such great advice and help.

    Our son, Oliver, was born premature at 30 weeks and weighed 3lbs exactly. Oliver was in the NICU for 47 days. The NICU in all honesty is the hardest part of the journey, so far in my opinion. Within 24 hours of his birth he had his Spina closure surgery and then had a "tap" installed in his head for the doctors to daily pull the spina fluid from his ventricles in his brain to prevent hydrocephalus. The reason a tap was installed and not a VP shunt at the time is because the doctor required him to be 4lbs for the VP shunt. Oliver also had a feeding tube and for a little while had a pap machine (forgot what it was called) to help him breath since his lungs were not quite developed yet. Now keep in mind, the feeding tube and pap machine were due to him being premature, not Spina Bifida, as well as him being in the NICU for a very long stay. Around day 20ish, Oliver was able to have the VP shunt installed due to Hydrocephalus. Below is an image of Oliver when he was in the NICU.

    So that is the NICU part and it probably didn't comfort you at all. It is the part that you have to know because it will be difficult. However, the part I am about to show you is what will help you get through it.

    Oliver is now 4 1/2 years old. He is an amazing, extremely smart, perfect, independent person. When people say, "Your child will have no quality of life", I refer them to Oliver. He has completely changed ours, our families, and everyone he meets life for the better. He is extremely active and plays in baseball, soccer, and even flag football. If I could go back 4 1/2 years and tell myself not to worry, I would. That is why I made this post, incase it helps give someone comfort. Things might seem grim for you now but please trust that it will get better. Think of the good times ahead for you and your child. Life is a journey, there will always be hard times but you were given this life because you are strong enough to live it.

    Below are a few pictures of Oliver. One is of me holding him while he plays baseball at Yankee stadium on our Playstation VR. Next is a picture of him taking his mother out for Valentines day. The last image is of him in his baseball uniform getting ready to go play his last game of the season.

    "I am not afraid of storms, for I am learning how to sail my ship."
    Last edited by AaronBrittney; 07-16-2018, 02:52 PM.