Caileigh's Story

I found out I was pregnant in July right before my 22nd birthday after having a misscarriage in Feb. I had a difficult pregnancy from the start in my 7th week I started bleeding then went to the doc had an u/s and they said everything was fine and the baby was okay not to worry. Everthing was normal for about 8 weeks then my doc called to tell me my triple screen test came back abnormal and I needed to go to Perinatology for u/s and amnio to see what and if something was wrong. I had an u/s that showed a heart defect which turned out to be Hypo-plastic Left Heart Syndrome and they tried doing an amnio but I went into labor and they had to stop. Two weeks later I went for another amnio and a few days later I got the results. My daughter (is was a girl) had Trisomy 13 a genetic disorder that ment instead of two copies of the 13th chromosone she had three copies. A disorder they said was not compatable with life. I was then asked to decide if I wanted to continue my pregnancy or terminate it. I was not willing to give up on my daughter a decision the perinatologist made clear they thought was the wrong one. I did not like the way I was treated there when I asked if it was a girl or a boy the doc said is WAS a girl. Was??? I wanted to kill the lady my daughter wasn't anything she is a little girl my mind was screaming and they wouldn't even act like she was alive,(they were only willing to treat me not Caileigh) so I went back to my original o/b. During my pregnancy more problems were found. Caileigh had rocker bottom feet, a bilateral cleft lip and palate, a sixth finger on one hand, the posability of no kidneys (they couldn't tell for sure), her brain had not seperated properly, her eyes hadn't developed at all, and my umbillical cord only had one vessel. Still my pregnancy progressed and Caileigh kept fighting(through 2 car accidents no less). My little angel had a will to live that no one had expected. No one but me that is. I so strongly believed that God wouldn't take my daughter from me untill I got to hold her in my arms at least one time, to kiss her little face and whisper in her ear how much I loved her and wanted her no matter what. I was wrong. At my check-up in my 39th week they couldn't find Caileigh's heartbeat and a u/s confirmed that she was gone. I was induced that night and gave birth to my beautiful sleeping angel Caileigh Lynn DeWitt at 8:34 A.M. March 2, 2006. She was 4lbs 4ozs and 17 inches long. She had a headful of beautiful curly hair like mine and her dads hands. She's the most beautiful little girl I've ever laid eyes on. There isn't a second in the day that I don't miss her and love her. My only child who I'll never get to know.

Trisomy 13(Patau Syndrome) is a rare genetic birth defect where a baby has three copies of the 13th chromosone instead of the normal two. This is said to occur in 1 out of every 5,000 to 10,000 births but, that is not counting the 70% that are misscarried in the first trimester. Parents who recieve a diagnosis of Trisomy 13 are told that it is "incompatable with life". There are no more devestating words a parent can hear. We we're told that no child with Trisomy 13 had ever lived longer than a month and we're strongly encouraged to terminate my pregnancy. I refused and it was made very clear to me that the doctors thought I was wrong. Later we found SOFT(Support Organization for Trisomy) and found the doctors we're wrong. I even talked to the mother of a now 12 year old boy(with full Trisomy 13). While it is true that most Trisomy babies will not live past infancy some do. As rare as Trisomy 13 is the correct information is not getting out to doctors and there are some who have never even heard of it. If no one knows how are we supposed to increase these babies chances? Years ago they said Trisomy 21(Downs Syndrome) was "incompatable with life" also but, someone had the courage to stand up and say "Hey, these babies matter." Research was done and now Downs Syndrome has a much better outlook. While I may not be able to save my daughter, I can make sure that she is not forgotten. If some good comes out of her death for someone what better legacy can she leave behind her? Maybe just maybe out of the pain of losing her I can help so that down the line some mother like me doesn't have to lose their child.

A child is always a blessing and my daughter was no different. Even knowing how it would all end I wouldn't change my decision to continue my pregnancy. I was able to love and carry her for nine months and that is more than some women get. My life and the life of those who love me will be forever changed by a 4lbs 4ozs little girl with curly hair and perfect little hands who was never able to take a breath in this world.