Thursday, October 3, 2013

Almost One / SIDS Research

5 1/2 weeks and my baby boy turns 1. Well, should turn 1. Pretty much from now until April will be me anxiously waiting and wondering if I will have a nervous breakdown as we get to November and Jones' 1st bday in heaven, get through the holidays, make it to February and Tess's 4th bday in heaven, get to March which marks Jones's 1st anniversary of his death and then less than a month later remember Tess's 4th death date as well. As I sit here thinking about what I just wrote, well I just feel numb. I honestly still am in disbelief that I have given birth to 5 children and 2 have just went to sleep to never wake up again. I am in disbelief that instead of planning my Jonesy's 1st bday, I will fret and fret over what I can do to celebrate a deceased child's bday. Will think that nothing we do, is just not good enough. Never good enough to adequately show our babies how much we love them. How much we remember them. I'm still in disbelief that I will have another child who has their first birthday in heaven. It's not fair.

On another note. My babies and my family have been asked to be in a research program that studies sudden infant death. If you don't know much about SIDS then you wouldn't know that the doctor and the team that she has doing this research.....well they are kind of big in the SIDS world. Dr. Hannah Kinney, renowned pathologist and SIDS researcher and from Boston Children's Hospital has asked to study us. Our babies pediatric records, their autopsies and even sweet Jones's brain (which I just found out had been saved by the medical examiner). Dr. Kinney explained to me on the phone several weeks ago, that Jonesy's brain had been saved by the medical examiner because his brain weight was twice that of a normal 5 month olds brain weight. Random, but everyone of my babies have had huge heads. My husband has a huge head as does his dead. I also have a fairly large head as does my daddy. This post is all over the place but Dr. Kinney explained to me how going back to the 1980s SIDS researchers have found links between babies with large head circumferences and SIDS. There is a doctor on her team that has focused his part of the research on this. It is unpublished but she said that he thinks he has found a gene in these babies with large heads. She told me that he is so excited to have finally found a family with this familial trait of large heads and that have this SIDS history. Called the study with us groundbreaking maybe. Anyway, Bryan and I are going to give out DNA as are any other family members that want to participate. This is one of the only things that has given me any comfort in the last 6 months. I keep thinking maybe this is why 2 of my babies have died. Maybe they will be help solve this terrible mystery of why healthy babies go to sleep and never wake up. I pray.

I have had a rough few days. Hard for me to function. I don't know how to do this. I'm trying though.

1 comment:

Jamie Reese said...

I think what you're doing is awesome! Huge! Since Sully wasn't biologically mine, I don't really feel like there's anything I can do. Besides he was like the freakin poster boy for SIDS. Mom smoked, did cocaine, boy, winter, 16 weeks 2 days, recent respiratory infection. Crap, I'm a medical person, I should have seen it coming. But, boy did I not! I used to sing him You Are My Sunshine all the time, especially with his last bottle of the evening. I'd get to the please don't take my sunshine away part and just beg and beg God not to take him. I was so scared that the adoption wouldn't go through, that I'd have to give him back. Him dying wasn't even a thought. Now it's every thought. The state hasn't given my file back to the agency, so right now I don't have an active license. I was going through the foster system. Their investigation isn't final! The police investigation and he coroners is all complete, but 2 1/2 stinking years later and they haven't decided if I'm responsible. He was , btw, at the sitters when he died. 15 minutes into his morning nap. Sorry to ramble. I just love that you're willing to let your family be studied in hopes that some day parents won't have to bury their babies.