In May of 2009, we went to our regular ultrasound just as we had with our previous children. As the ultrasound tech scanned the baby we started noticing facial expressions that made us worried. My Dr. came in to meet with us after the ultrasound and was describing what they referred to as “markers” and telling us he was referring us to maternal fetal medicine for an amniocentesis. Later that week we went to the specialist and had the tests and another big ultrasound. They explained to us how the test worked and said we would know the full results in about 3 weeks and the preliminary (FSH) results in 5-7 days.
Slowly the days crept by until we received the most devastating news one could hear. The specialist called and explained to us our son had Trisomy 13. He was saying things such as “incompatible with life”, “extremely rare”, “no chance of survival”, “abortion”, “Cyclops eye”, “unnatural features’. I slowly sank until I hit the ground and sobbed. Matt and I made a personal choice and decided to continue on with the pregnancy. Days turned to weeks, weeks turned to months and our baby was still alive. The Dr.’s maintained that he was never coming home and the chances of him born breathing where lower than 1%. October 22nd, 2009, I went into the emergency room battling a cold that would not subside. I was receiving so little oxygen I don’t remember anything.
I was so sick my doctor decided the only way to save my life was to do an emergency c section and put me in a medically induced coma to let my body heal. So the morning of October 23rd, he preformed the surgery. I must admit that those doctors were right about 1 thing, and only one, they brought a 6 pound 8 ounce little boy into this world that was not breathing. They tried stimulation, oxygen, and other measures before laying him on my sleeping body to “die.” Well that little boy we brought into this world, he was nothing more than a fighter, he took a breath, and another one and right before their eyes he was breathing on his own. His daddy brought him home just 2 short days later on no machines! I came home 21 days later and started looking for help and answers. The doctors said he would not live and here he was almost a month old, LIVING. I knew there had to be something out there, someone who could teach me how to help him. I went to an appointment and was expressing how they told us he wouldn’t live and have pretty much set him up to die, but I wasn’t going to accept that. I wanted more for him.
Luckily, the nurse who I was talking to knew about Family Voices of North Dakota. She emailed one of the family supports my story, and within a couple days I was talking to her. It was there I started a journey of a lifetime. The lady I talked to set me up with our regional human service center, told me about Medicaid, and disability. The HSC came out and did an evaluation, within a week I had therapy services providing in home support to our son, I was able to apply for both Medicaid and disability to help with bills since our son was too medically fragile to allow me to go to work.
Family Voices is the ultimate reason our son accomplished so many milestones we were told he would “never” reach. Family Voices provided so much support there are not words to express my gratitude. I have developed a life long relationship with all of the staff. Our last milestone we were able to celebrate with our son was his first birthday, another one of those things that would “never” happen. Our son passed away at 14 months old, peacefully during his afternoon nap. The Family Voices staff came to the funeral, and has supported us everyday since then. We are so lucky to have been in the right place at the right time to hear about such a wonderful organization. After Carson’s passing we expressed our frustrations with a few people from a few organizations about the lack of hope we were given, and the lack of resources to find help. We felt as though we were the only ones fighting for this miracle to live. We partnered with these wonderful organizations to form Project Carson in hopes that no other family will have to feel so alone.