I thought that writing about my experiences might be healing for me and maybe helpful for other moms who may be going through something similar.

My story began early this year on January 23 when during our routine ultrasound, the tech saw some things that concerned her. We thought we'd just be finding out if we were having a boy or a girl, instead I found myself having an amniocentesis. A little over a week later test results showed that our little boy was missing the top half of his 5th chromosome, a condition called 5P Minus or Cri du Chat. Cri du Chat as we soon learned is also called Cat's Cry Syndrome and is a pretty rare genetic condition. We would not know the extent of his condition until he was born but learned that there is a wide range of possibilities from very mild developmental concerns to the very real possibility that he might never walk or talk. The five months until his birth were difficult and often heartwrenching but we loved this little boy from the moment we learned we were pregnant. We looked forward to his birth and to all he might become.

My due date, June 19, came and went. While I was miserable, I was hopeful that the extra time in my womb would give his cerebellum (an area that ultrasounds showed was smaller than it should be) more time to grow and catch up. I went to the hospital on June 24 for a stress test and it was decided that I needed to be induced. Labor went well (especially once that epidural kicked in!) and at 6:16pm our little Matthew was born.

I held him just briefly before they whisked him away to the NICU. He was just not breathing as well as they would have liked. Probably some fluids in the lungs, they said. No big deal. They'd take him to the NICU and give him some oxygen. I thought nothing of it. If I had only known, I'd have held him longer, taken pictures, kissed him and so many other things I now think about in hindsight. Three hours passed before the medicine from the epidural wore off and I could go see him. But then, they were working on putting in a feeding tube so I left. I saw him really for the first time about 11pm that night. His face was hidden under an oxygen tent and he was mewing like a little kitten. It was hard to see him like that so I just talked to him and touched him for a short time. He opened his eyes and looked at me when I talked to him and I would like to believe he knew that mommy was there. I left him to go pump since that was the one thing I could do. I could give him nurishment even though I couldn't make him better. Shortly after, Matthew's doctor came up to tell us that the oxygen tent wasn't working and that they were going to put him on a ventilator. A few hours later, the doctor again came in to talk to us and this time it was to tell us that Matthew needed a different ventilator. We didn't realize until we talked to the doctor again in the morning that this was the last step. If the second ventilator didn't work, there was nothing else they could do.

The morning after Matthew was born, his doctor came in to tell us about Matthew's progress. He sat down with us and told us that if Matthew's lungs still would not take oxygen on the second ventilator that we would have to have a conversation about whether or not to leave him on the ventilator. After he left, my husband and I were in shock. I remember thinking: I'm going to have to decide about pulling the plug on my baby?! We sent out a mass email asking our friends for prayer support and then we had to make the hardest calls of all - we had to call our parents. I called my parents and told them that if they wanted to see their grandson, they needed to get in the car and make the seven hour drive.

The morning passed in a blur and, again, if I had known what the future held, you would not have been able to drag me out of the NICU. Family and friends came to the hospital to support us. As we held our little boy cushioned by blankets and attached to all sorts of machines we talked to him, sang to him and prayed so many prayers. But as the afternoon progressed we could see the numbers on the monitor and watched as his heart rate and blood pressure fell. We knew he did not have much time left so we made the call to take him off everything except the ventilator and take him to the family room. My parents made it just in time but we didn't get our daughter there in time. I held him as we sang Amazing Grace and he died before we finished the song at 5:15. He was with us for only 23 hours. His little lungs for some reason never fully developed. It's not a condition associated with 5P Minus so it was totally out of the blue. We thought Matthew would have challenges and were prepared for a rough road ahead but never, ever thought we wouldn't be bringing him home.

It's been a month now since he died and I still don't understand why it happened. I hold tight to my belief that I will see him again one day. But I miss him so much.