My son Joseph was born on March 10, 2013. He was my third child and my only boy. He was “perfect”. A few days after my son was born we noticed his head was a weird shape but thought it was due to the fact that he was 9 lbs 2oz and had to squeeze his way out. At his three month check up my doctor noticed his forehead was forming a weird shape and also noticed a ridge down the middle of his forehead. She sent me to a neurosurgeon just to be safe, thinking maybe he just needed a helmet to correct it. I kind of put off making the appointment and finally a few weeks later my son and I were at Montefiore Children’s Hospital to see Dr. Goodrich. I was scared thinking my baby would have to wear this helmet to correct his head. My sons name was called and we enter Dr. Goodrich’s office. As soon as he saw my son, he said “I know what’s wrong with you little man” and for the first time ever I heard him say this huge word “Craniosynostosis”. Once he started explaining things to me, I heard the word surgery and that my son would need to have a plate put into his forehead held in with screws, I stopped him and said “Excuses me did you just say my baby will need surgery?” He replied “Yes” and I lost it. I left his office trying so hard to pull myself together as I walked through the hospital halls and as soon as I got into my car I cried my eyes out. I called my husband and tried to explain to him what I had just found out but I was so upset my mind would not work properly. We had to schedule a CT scan to confirm this. I pretty much cried for weeks and once the CT scan confirmed it, my heart was just torn out of my chest. I just could not accept the fact that my son would have to go through this surgery. Things like this don’t happen to people like me. I was in complete denial. I questioned my faith and was so mad!
His surgery was scheduled for August 5, 2013. Then the waiting began to set it. Part of me wanted it over and done with and part of me wanted to take my son and run for the hills. The surgery date crept up very quickly and the night before I could not sleep. My mother in law stayed up all night talking to me, trying to calm me down. Finally the next morning, my son was in such a great mood. He was so happy! My heart was breaking knowing that he had no idea what he will have to go through in just a few hours. We arrive at Montefiore Children’s Hospital and enter the room to get him ready for surgery. I held him so tight for about 2 hours and he slept the whole time until finally the doctors came in to take him out of my arms. That was the hardest thing I ever had to do. Knowing that my son will not see anyone he knows…will he be scared? Will he be screaming? Will my baby be ok?? We went back to the waiting room and waited and waited and waited. The doctors came out a few times to let us know that everything was going great and after a long 5 hours my baby was on his way into PICU. I was so happy to know that my baby made it though the surgery ok. I saw his bed being wheeled into his room and I ran down the hall to his bedside. No one could ever be prepared to see their child in this kind of way. Hooked up to all these machines. He also needed two blood transfusions. I was so scared but yet so happy to see my baby with his little head all wrapped up. Right away your motherly instincts kick in and you have to pull yourself together to be there for your child who needs you. The swelling got worse hour by hour. By the second day he could no longer open his eyes and his whole body began to swell. It was so horrible to hear your baby moan in pain and just lay in bed for days with a high fever. We spent two days in PICU and then moved down to the regular floor. The third day was the worst for my son. The swelling was so bad he was having problems breathing and his fever went up to 103.9. Since his head swelled twice the normal size I did not even recognize my own child!! I had to put cold rags all over his body and change them every hour all night long. On the fourth day I finally got to hold him. It was amazing even though he was in so much pain from being moved. His head was so heavy. I had to support it even more then when he was a newborn. On the fourth day he started to smile. On the fifth day his eyes started to open a little and we were able to go home. A few days after we came home, we had to return back to the hospital to take off his head wrapping. I was so nervous to see the cut, but it actually looked good..pretty much like a big scratch. They closed it from the inside, so the scar will not be bad. A month has now gone by and he’s doing great. He is still not sleeping due to nightmares from the trauma of the surgery and his hospital stay but he’s amazing. I believe now that God does gives us what he knows we can handle and cranio moms are super strong moms!