Wednesday, October 29, 2008


Yesterday, Oprah featured miracle children. One of the children happened to be Eliot Mooney, a baby with Trisomy 18 who lived 99 days. The show featured the video on YouTube called "99 Balloons." I will be posting the link to it on here.

The Mooney's wrote letters to their son for everyday he was alive, took over 3000 pictures and made a video about the life of their son. The miracle of his 3 month life. The video is a beautiful tribute and one day there will be pictures of my darling Caleb on this blog.

Here it is...Please watch it.

Monday, October 27, 2008

What happens when the "whens" becomes "ifs"?

Recently, I've been upset with the fact that the "whens" in Caleb's life have now turned to "ifs." I had so much planned for my son and now it's all been ripped from me. For example, it was always "When he comes home..." and now it has become "If he comes home..."

There is nothing left except to say that I'm angry beyond belief. There should never be a question like this in my head or in any mother's head. My son deserves a future. He deserves to have a life and I was going to be the best provider that he would have ever had. I don't understand why I was tapped for this. I'm the impatient kind, and this situation doesn't change my personality. I want the answers as to why this happened NOW. I can't stand the fact that I have to wait to find out the reason behind this. Why this had to happen, why it happened to me after everything he and I have been through.

I try to keep my head up and stay positive for his sake. He still has a full month of growing to do and I won't be the reason he decides to leave early. I want to see him open his eyes and I want to feel him grab my finger. At least once. The problem I'm having is that I still have breakdowns, I wake up at night and freak out because I think that he's gone. The worst of it was when I was laying in bed with my hand on my stomach and I felt his heel kick me in the hand. I just started to cry cause I never felt anything so incredible in all my life. I often wonder if that's the only time I'll feel him kick, if I'll never feel him kick me outside of my body.

I wonder if he'll make it to Christmas, New Years, etc. The worst is that Halloween is coming up and I know there will be babies dressed up and I wonder if he'll be able to do that. I wonder if he'll surprise us all and prove us all wrong. Who knows? Only God, and I'm still trying to get over my anger with him.

Thursday, October 23, 2008

Magee Update

Hey everyone,

Yesterday, my mother and I went to Magee again. This time it was my turn to talk to doctors and discuss what my options were for my son. This was a trying day.

First, we had an ultrasound to look at his current status. I just can't help but look at the screen and think that he is still the most perfect baby I've ever seen. I know it's not possible to change the outcome, but I so wish that the doctors were wrong. I know they aren't. His little hands are definitely clenched and I could see them right on the screen.

Next, we were meeting with the obstetrics team cause they will be the one's delivering Caleb when the time comes. I met with 2 of the possible 20 doctors and they answered a lot of my questions, including the ones I felt were stupid. They gave me options for my delivery, and I had to make decisions. The first one I've made was not to have Caleb's heart monitored during labor. The doctor's told me that I will not be in a good place on the day and they fear that I will stress out too much if Caleb were to ever come into stress. Next, it was decided that I will not be having a C-section because it could pose a significant threat to me and it would not benefit the baby at all. Then, I decided that if he were to be born to alive (there's a significant chance he will be stillborn), there will be nothing heroic done to save him. I'm too afraid that his ribs will be broken if they pump his chest and in the end, it won't really save him.

Finally, we met with the Neonatologist. She was the best of all the doctors I met yesterday. One of the first things she did was ask if we had a name for him. When we told her, she continued to refer to him by his name, not as "the baby" or "it" or "him." The whole experience with her made me feel like I could trust her with my son. She also gave us options of taking him home or having him transferred to another local hospital so I can visit him. I made the decision to bring him home so that he can die in my arms as opposed to dying in a plastic box a few miles away from Mommy. I want him to feel comfortable before he goes.

Well, that was my Magee experinence from yesterday. And let me be the first to say that I was relieved. The first one was not a positive experience, so I was glad to have this day. I cried all day, but I know that this is something I have to deal with.

Tuesday, October 21, 2008

This is dedicated to my son...

Hello world. This blog is specifically dedicated to educating people on the genetic disorder called Trisomy 18. Please make sure to pass this on to anyone and everyone cause this disorder is not nearly spoken of enough.

Trisomy 18 is a genetic mutation of the 18th chromosome. Instead of the normal two chromosomes (one from mom, and one from dad), there is a third chromosome that forms. This disorder causes many congenital defects in the child and a severe to profound developmental delay. Children diagnosed with this disorder usually do not make it past a couple of months of age or they miscarry before their birth.

Now a little about me. I'm a 24 year old woman expecting my first child. I was thrilled and shocked to find out I was pregnant because I'm not married and I was definitely not trying to get pregnant. I'm one of those people who rolls with the punches, so I got over my initial emotions and focused on my baby. The father was excited at first, but the relationship wasn't working. He decided to leave me behind with his child. After some time, I got over to the fact that I was going to be a single mother and started looking forward to the future I was going to have. I moved home with my parents to get back on my feet, and they have been nothing short of amazing to me and my child.

My story truly begins on October 7, 2008. My local doctor had me get an ultrasound to check the anatomy of my baby. After 2 ultrasounds with my local doctor, they told me that my little pumpkin was measuring small and it was a concern for them. The doctor was supposed to come and talk to me, but she was unable to discuss anything with me. The office scheduled my appointment at Magee Women's Hospital for the next Tuesday so that I could have a Level II ultrasound. I asked my mother to go with me because I had concerns of my own and didn't want to go alone. She agreed.

That day, we drove to Pittsburgh and had lunch like it was a normal day. I signed in and waited patiently for my turn on the table. The ultrasound technician came in and went about her normal business. She didn't talk much the whole time. I was sitting there with my mother for over an hour before she said she needed to get the doctor to discuss some things with me. The doctor returned and started his screening.

After several painfully quiet minutes, the doctor looked at me and asked, "Why were you sent here today?" I responded by telling him the doctors at home told me my baby was small. He continued by saying, "Ok, well we have a number of concerns here. We're going to start at the top and work our way down."

He showed me my baby's brain and told me it wasn't developing properly. Next was the heart and showed me the hole in the two bottom chambers. His bowels came next and they are twisted. He then showed me his feet are clubbed and his hands are clenched. He then concluded with, "All of this put together leads us to believe that your child has a trisomy condition. I'm sure you've heard of Trisomy 21, which is Down Syndrome. This one is called Trisomy 18 which is like Down Syndrome, but it's much, much worse." Instantly, I turned to my mother and burst into tears. He told me that he was going to send me to the echocardiologist to look at my baby's heart to see how bad the hole in his heart was. Then, I was to meet with a genetic counseler to discuss what Trisomy 18 really was and what I was to do next. After that, I was going to go back to the ultrasound room to have an amniocentisis done to confirm the results.

The echocardiogram showed that there was a definite hole in the heart, but it was fixable. The genetic counselor informed me further about the disorder. She told me everything that I had listed in the first paragraph. Following that, I went for the amnio and was told that I would get the results in two days, but they would try to let me know sooner what the results were.

My mother and I left the hospital, shocked and angry about they whole day. I wondered who to blame, who to hate, what to do next. I knew I had to carry to term because I was 33 weeks. I knew I would never have gotten an abortion anyway because of my beliefs. I knew the baby shower was scheduled for that Saturday and I knew I had to inform everyone about what was going on. My mother and I called people for the rest of the week and let them know what was happening and I even wrote a blog on Myspace.

I decided to do this blog because it will be specifically about Trisomy 18, my experience and my newfound crusade to push for the education of this. I had no idea this disorder existed and I've taken child development courses throughout my education. So now, I've decided that this and all Trisomy disorders need to be in child development books and there needs to be better education for health professionals and parents alike so that people will know how to deal with this devastating diagnosis.

This blog is dedicated to Caleb Alex. I spent 8 months planning a future with him, and now I'm spending the last month of my pregnancy trying to make sense of everything that is going to happen now. This blog is dedicated to the mothers, fathers, grandparents, aunts, uncles, and siblings that have ever had to deal with this horrible diagnosis. Our children will not have suffered or died in vain.