When I found out that I was pregnant on November 20, 2006 it was the happiest and the scariest day of my life. My husband and I had been trying for about seven years with no luck. I thought that it was too good to be true that after all these years, I was finally going to have a baby!
On March 23, 2006 my entire life, so it seemed, had changed forever. I went for an ultrasound, just like I had before. But this time, as my doctor carried out the ultrasound he seemed to be looking at her brain a little too long. My son was with me so I didn't want to cause a big scene. I asked my doctor calmly what was wrong. He said, “Oh nothing. I just want to see you back in two weeks so I can just look at things again.”
I knew then that something was wrong, but I couldn't scare my son. I had to let it go for the time being. When I got home I went into my bedroom and just cried. I knew something was wrong. My husband called and I told him something was wrong with the baby's brain. When I got off the phone with him, my Ob called and told me that he didn't want me to worry, but the baby had a brain bleed, one that couldn’t “fix” itself.
My husband Jay and I both went back to the doctor to have another ultrasound. It was confirmed my child had hydrocephalus. Our doctor told us that we could have an abortion. He said that Madison probably wouldn't even make it through to the end of my pregnancy anyway. He told us that children born with hydrocephalus have a very difficult first year - if they even make it.
I had never even heard of hydrocephalus, let alone know what it meant. It was not a choice for as far as we were concerned to have her or not. She was my baby and it didn't matter what was wrong with her. I just wanted to keep her safe. She was the little girl God gave me and I wanted her no matter what. But what in the world was hydrocephalus - and would my baby be ok? We went home and got on the internet – boy, that was not a good decision. Everything we read told us that these babies die. From that point on I had to go the doctor every two weeks. My doctor said we would have to have the baby early and have to have a c-section. That was about the last thing I wanted to hear.
The day finally had come to have Madison who would be arriving almost six weeks early. The doctor said she would weigh 5lbs or so. I had never been so scared in my life to do anything as much as this. My doctor said he didn't know if she would make it or not. I just wanted my baby it didn't matter to me what was wrong with her. They started and everything seemed to be going okay until I felt them jump on the table with me. I felt a pain that I should never have felt and I passed out! When I came to my husband was crying. I said, “Oh God, no!!!” He said, “No” - he was crying because they said they almost lost me.
Madison weighed 8lbs and 12oz - 6 lbs of the weight was her head. They had never seen a baby born with that head size before. They told my husband that she wouldn't make it through the night and if she did she would be brain dead. I had her at 12:07 p.m. and I didn't get to see her until 10:30 that night.
When she was two days old they put a shunt in. The surgeon came out when he was done and as cold as can be, he said that the surgery went well but that it didn’t really matter because she wouldn’t make it. He said Madison had only 10% total brain and that she would never be able to do anything. This was the worst day of my life. I was going to lose my baby - what would I do? I just wanted to hold and keep her safe.
I never left my baby's side unless my husband stayed with her. I told myself I was not going to leave her in case something happened like they all said it would. I have two older children Kristie, who is now 15, and Zachary, who is 12. They stayed and sung to her and read her books.
The hospital has a place called the “Hope House” that we were allowed to stay. It was like a hotel at the hospital. It was great because every once in a while I would get a few hours of sleep while Jay stayed with her. I believe that Madison did as well as she did because we were able to be by her side all the time.
Most of the nurses thought we were crazy because we wouldn't leave her side. I would just ask them, “Are you telling anyone else that they are going to lose their baby at least three times a day? How can you ask me to leave her?” If she was going to go to Heaven she would leave with us by her side - no matter how hard it was for us. It wasn't about what we wanted or how we felt any more. Everything we did we did for our baby. Day after day, she grew stronger and stronger and we finally went home after three weeks. But when we took her home they said that there was nothing else they could do for her. I was then told that she would have a week or so to live.
Because we felt he did not appreciate how much we value her life, that first surgeon is no longer Madison's doctor. When a stitch from her shunt surgery caused her to have brain-bleed, he refused to be pro-active about treating her. He said we just didn't want to accept the fact that our daughter would never do anything. I told him God gave me daughter and I would find a doctor that knew what the hell he was doing.
So, we took Madison to Riley Hospital, which is several hours away. We met with the wonderful Dr. Boaz who has been God-send to us. He was so understanding and actually listened to us. He looked at her and said that something was wrong. On December 20th my daughter had to have a surgery to remove the stitch down in her head – the one the first surgeon was so sure wasn't there. When he was done he told us that if I hadn’t pressed the issue, Madison would have ended up in the PICU with an external shunt for at least a month because it was getting that infected. I have now learned to listen to myself when it comes to her. I know her better than anyone else and no one will protect like I can.
Madison is now 15 months old and the love of my life. I would not me the same without her. She can say 57 words and knows 9 baby signs. She can tell us where all her body parts are and she can say 4 colors. Madison could feed herself at 6 months and started talking. At 8 months she was able to sit up by her self. She can now crawl and walk if you hold on to her. Soon she will be able to walk all by herself. We give her therapy four times a week. All the doctors are so amazed with her now. They say they don't understand why she does what she does. I told them she is God's baby and that is why she does so well. Madison is my miracle and the best gift God has ever given me. I truly feel that I won the baby lottery!
I'm telling this story because I want to give other parents hope. I was given no hope by any of the doctors, so I wanted to be able to share her story. God is great and is in control of our lives! With Him we really can do anything!
Our friend Kelley has been really busy spreading hope to parents who find out their baby will be born with hydrocephalus. Check out her website, which has lots of new and gorgeous pictures of Madison and information for parents going down this path.