Raising a Child with a Disability:

Meet my son Hayden James, who was born on July 12, 2009 at 11:48am weighing 7lbs 10oz and 22in long.  Hayden was born with Spinal Bifida or as the doctors called it Meningocele, were a cyst on the thoracic vertebrae-T4 was pooling up with spinal fluid, because the spine had not fully closed. He had to have surgery to fix it. For the first 3-4 months of Hayden's life he was not allowed to do things other babies were able to do. 

Just after I delivered Hayden the doctor and nurses said ut-oh. They told me nothing for the first 15 minutes. I was upset and worried when I heard them say that, so I kept asking what was wrong, they still didn't tell me until, I got up off the delivery bed and walked over to my son, that's when they showed me his back and told me not to touch my son and that they had no idea what was wrong with him. They needed to have a special ultrasound technician do an ultrasound on his back. We were told that the ultra sound was going to be done Monday morning but the guy that does the ultrasounds was called in so we were able to have it done late Sunday night. Monday morning we got the results from the ultrasound and the technician said it looks like the liquid that formed the cyst was coming from the spinal column and that they would have to have Albany Medical unit come down and look at him and transport him to Albany Medical Center in the NICU unit. Pat and I have been both worried about what’s going on with our son and we both just want him 

better so we can just take him home with us. 

On July 13th 2009 Hayden left in the transport unit before Pat and I (even though I was supposed to go with him, they didn't let me). We left the hospital at 12:30 and went to Wal-Mart to go get my meds that they gave me at the hospital and left for Albany at 1pm on Monday. We got to Albany and found the Ronald McDonald house and we are able to stay there to be able to go visit our son 24 hours a day anytime we want to and we can get a shuttle bus to the building that he is at. Everyone that we have met at the Ronald McDonald house here has been great to both of us. When we both got all settled in and got some food in us we went to see our son for the first time since he had left Oneonta and once we walked in the door to the nursery that he is in he started yelling and we bout though it was kind of cute that he knew that we were there. We were told by the doctor or nurse that's taking care of him at the time that he was on the list to have an MRI done to find out what exactly is going on and what they’re going to do to fix it. We left and ended calling back up at 10pm to see how he was and we found out in a few minutes he was going to be going down for the MRI and to try back in about 1 hour and 30 minutes. Pat and I ended up going back to the hospital at midnight to see how he was and to tell him goodnight. When we got there the nurse had told us that he moved too much and tomorrow (July 14th) that they would have to give him a stronger sedative and try the MRI again.  

July 14th 2009 at 4:30pm, about 20 minutes after we had just got back from the hospital, we found out that Hayden stayed still enough for them to take the MRI. The Neurosurgeon reviewed the MRI and told us that there seems to very low risk of any neurological damage when they go into surgery tomorrow morning at 7:30 am. We were also informed that the surgery should go easy it does not look to be anything complex. In the surgery what they have to do is to go into the spinal column and fix a defect and cut away some of the skin on his back where the cyst is and pull the skin over so it’s a true skin on the outside.

On July 15th 2009 Hayden went in for surgery at 7:30am, it took 6 hours until the surgery was done. During that time I was told by his doctor and the nurses to go get some rest and they would call me when he got out surgery. I tried to sleep but every-time I fell asleep I had nightmares, It was an un-restful and agonizing 6 hours which seemed like forever. I was so scared when he went in for surgery, because I didn't know what was wrong with him or if during the surgery something went wrong. He had surgery and the doctor said it went great. They were able to go in and seal the spinal column up. Dr. Waldman said there was one nerve fiber that was in the cyst but it was not active and doing anything. The other part of the surgery was that they had to remove the skin that was part of the cyst and pull his back skin together and sew that up. Hayden went back to the NICU room and was on a breathing tube until he woke up and they are comfortable that he can start to breathe on his own again. With the results of the surgery there are still a few risks like of infection, but the results also made Pat and I relieved that everything went well. It was hard for me not to be by his side all the time after his surgery. It was hard for me to see my baby boy hooked up to all those tube and machines, I cried every time I saw him like that. Seeing the machines and the tubes hooked up to him made my heart break even more. I keep thinking the worst but keep telling myself everything would be okay, he's as strong as his mommy, if not stronger and that he would pull through. We all would get through this hard time. I told him he wasn't alone and that we were there for him. I just kept talking to him, holding his hand and I breastfed and gave him as much kangaroo time as I could. His surgeon said that was great for me to do, that it would help him in the healing process, due to the touch and comfort of his mama.

On July 19th 2009 we got news that we would get to take Hayden home tomorrow on July 20th 2009. We stayed the night at the hospital in what’s called the Room in room with him and he is not hooked up to anything. 

One thing that is very upsetting is that doctors would ask me why it was never caught by an ultrasound. My answer is always the same, 'I didn't know it what spinal Bifida was or that it could be caught by an ultrasound and they should talk to the ultrasound technicians because I'm not an ultrasound technician. 

He walks and talks just fine, and he performs tasks at his age level or a bit above his age level. Hayden is not disabled, at least in my eyes; he was born with a disability. I'm not trying to make light of Spinal Bifida and it wasn't always easy. I would say a disability would be something that causes a task to not be accomplished. But that is just my point of view and opinion. 

I have to say this much. I went to Early Intervention Partners and Parents meetings. They were extremely helpful. I made new friends, like: Ruth F., Michele D., Karen S., Shannon T. (others include (Initials only): BT, KRT, CAS, MS, SM, TJ and TH. They are wonderful people. And I am happy that I met them and became friends with them, they all opened my eyes and helped me in some way or another.