Justice was born full term and mostly healthy. His little head was misshaped and he had a kink in his neck so they said he had plagiocephaly and torticollis and went ahead with the treatment for that which consisted of therapy for the neck to stretch it out and a helmet to correct the shape of his head. When we got the helmet they said it would last roughly 6 months but within a month he outgrew the helmet. We saw so much of a difference we went ahead with number 2 helmet. Once again they said 6 months but he started to outgrow it in days. So the orthopedic doing the adjustments thought something wasnít right They already were concerned because no one ever did a CT or MRI to rule out anything else so we as a team decided we need to go back to his primary and insist harder on a CT or MRI. They wouldnít budge but the plastic surgeon that made the referral for the helmet did and we got to get Justice a CT for the 1st time, he was close to 6 months old at this time.
Next they said after looking at the CT that he needed to see a Neurosurgeon, still not letting me know there is something seriously wrong. When we got to the NS she did a MRI twice back to back. When we returned to her office she sat me down and said it is serious and he needs an emergency brain surgery...he has hydrocephalus complicated by 2 sets of subdural hematomas and they can possibly claim his life at anytime. We thought NO WAY! He is perfect and he isnít acting weird or anything so I asked if he can get a 2nd opinion. She said time is of the essence and the next day we took him 100 miles away to hear that she is right. I rushed him back home and the next morning he was in surgery. He had a shunt placement and 2 external drains to drain the hematomas. He had to stay until the hematomas started to drain clear. It took 3 days. They removed the 2 drains and we were sent home. A few weeks later we did another MRI to make sure the hematomas were gone but they werenít.
The NS thinks after the shunt was placed and they were drained it left to much room for 2 more to develop. She said his brain was compressed for so long she thought it would pop back out like a sponge but it didnít. Next morning back to the surgical center. This time for a craniotomy. This surgery was longer than the last and much more scarier. 1st surgery he bled to much and had to have a blood transfusion. This time a nurse came back out about 2 hours into it and said he needed a blood transfusion AGAIN. This time he bled way more. I sat there waiting in the waiting room feeling like I will never have my little man back. I thought how could he ever be the same after all this?? He was so fun loving and happy.
He loves to hold Mommyís hand and I kept saying that if and when he wakes. If he grabs my hand I have my same lil man back! Well when they took me to him he was so bad off he was on life support. I was shocked...this didnít happen last time so why now?? What is going on?? Is he gonna be ok? What am I going to tell my other kids??What if he doesnít make it?? I was panicked! He slowly started to make some progress...They ask me if it is ok to take him off life support to see what happens. I hesitated but agreed. They took him off support and I held my breath. I sat there not really knowing what was even happening, if things were going right. The nurse turned around with the biggest smile ever and said he is doing great!! I donít think I have ever prayed so hard.
She asked me to come stand by the bed and I jumped up to get there. His eyes just opened!! He is crying and grabbing Mommas hand! He is OK!!! He made it! 2 days later we were home, just one day after thanksgiving and on my birthday! I had the best gift ever! I had my baby and he was doing great! He is now almost 4 and he is the smartest, happiest and funniest kid I have ever met. He is everything to me, my hubby and our kids. He hasnít had any complications since his last surgery. He has a bit of a left sided weakness, he is very cautious and he struggles with depth perception but besides that I couldnít ask for any better gift! I love to share all I can about his journey and love to educate anyone willing to learn about hydrocephalus! He makes it very easy because people are some how drawn to him. I couldnít imagine anything different and I thank our NS everyday. And another neat fact about my Justice, he was born in September, which is National Hydrocephalus Awareness month! Rock on Justice, we all love you!! And we are so lucky to get to be your parents and siblings!