My worst fears come true

I don't even know how to put this day into writing. It still seems so unreal, a nightmare. Every parents worse fear.

We dropped the kids off at a friends house and went to the specialist for the appointment which was at 9:30. My stomach was a bundle of knots today, I could barely drink some juice just to take my vitamin. Of course, we were stuck waiting until about 10:10 when we were finally taken back. The sonographer was very nice. She explained different things she was doing such as what part of the body she was measuring, etc. She did say she saw the cleft of the lip and that it was on both sides and that unfortunately the baby had a cleft palate also. As she continued her exam of the baby, I noticed she was spending a lot of time on the babys heart. I mean a LOT. I knew then that there was something else wrong. When she was done, she said she was going to go give the doctor the images and that she wanted him to go over a few things himself because she saw several things she was concerned about.

SEVERAL things??!! Oh dear god please no!!!

I didn't know what to think in those agnozing minutes as we waited for the doctor to come in. He finally came in and introduced himself and said he wanted to take another look. He was looking at the babys head, heart and abdomen. Then he started explaining what he saw. I'll never forget hearing what he said for as long as I live.

He said he was seeing several things that were wrong with the baby. He said the brain which is normally symmetrical and you can clearly see a line down the middle.....well, the babys brain is all blended together and you can't make out the different parts as well as there is fluid on the brain. He said the one eye is smaller than the other and there appears to be a cataract or something on that eye. He confirmed the bilateral cleft lip & palate. He said the one side of the babys heart is very small. Some of the babys intestines are outside the abdomen in a sack. He also said the baby is a month behind in size & is very small.

I just laid there speechless as I looked at my precious baby on the screen. In those seconds I felt my world turn upside down. This can't possibly be happening.

As if that wasn't bad enough, the doctor continued which such sympathy that I knew there was more.

He said we need to take things 1 step at a time but that he needs to let us know that with all he is seeing, that the survivability of the baby is in question. He said if he had to guess without further testing based on the brain alone, that the baby has what's called Trisomy 13. A chromosomal abnormality. Nothing geneticly inheritated from us nor nothing we did to cause this. He said if we wanted an amniocentisis, we could have one to offer us further answers as to what may be going on. We didn't even hesitate. We knew we wanted to know everything possible about our baby in order to be best prepared.

As I laid there waiting for them to prep for the amnio, I tried to process everything the doctor had been saying. I just couldn't get passed the fact that our baby might die. This tiny little one that I have felt move in me since I was about 9/10wks pregnant, whose kicks and hiccups are SO strong, who kicks back at me when I sit there poking at him/her.....may not survive. I just couldn't process it.

The amnio went well. It was no more uncomfortable than having blood drawn. The staff were all so kind in trying to comfort us. Because of having the amnio, the doctor said I had to take it easy all weekend. He briefly gave us a run down of the possible scenarios in the coming weeks, but that until we knew more what was going on, it was impossible to figure out yet what all was going to happen.

He said if they think the baby will survive birth, they have to figure out if a natural birth or a c-section is the best way to go. He also said depending on the level of the babys needs, I may have to deliver at a bigger hospital like Hershey. I was also told they are going to have to follow me & the baby closely now. There is a chance the baby could take a turn for the worse & get sick thus putting me in jeporady. If that happens, they will have to deliver the baby immediately.

We walked out of that office and just shook our heads asking did that all just really happen? How did we go from a little over a week ago, happily planning for a homebirth, talking about vacation with the baby to now wondering if our baby is going to even live? My biggest concern was how the kids were going to handle all this. They have been beyond thrilled for this baby, they've been involved from the begining. From the first ultrasound, to hearing the heartbeat for the first time to anticipating being present for the birth. Sarah just bought the baby an outfit just last week with her own money. It's bad enough the pain I was feeling but it hurt me even more knowing the pain the kids were going to feel. I wanted nothing more than to protect them from such heartache.

I still feel like I'm at a loss for words. I can't express the thoughts going through my head. I don't understand why God would allow such an innocent little baby to go through all this, knowing the baby won't live. Why let us bond with this baby all these months, making plans & dreams for this little life, only to take the baby from us after it's born. WHY!!?!?


  1. Oh Jenn, it takes me back to my diagnosis too. So much is so much the same as your story, except that Sebastian had T18. But so much of your day the same! My heart is with you! It was the worst day of my life.

  2. My son had Mosaic Tetrasomy 5P & our storiesare very similar, my son lived for 5 weeks, and then God called him home. Next week is his first birthday and I'm unsure what to do. Any advice?
    -Haley Trapp.
    Feel free to contact me on my Facebook!

    1. Hi Haley, I'd love to connect with you to share some suggestions. Feel free to message on my blog facebook page (I couldn't find yours) or click on the contact button to send me a message. ((hugs))


I enjoy hearing from each & every one of you! Thanks for taking the time to comment. :)