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Beau Douglas Steenberg
3/3/2016 Latest post:
Doug and I have been dreaming about adding a son to our family for quite a while now and we were blessed to find out we are expecting a boy due on March 17th (St. Patty’s Day), 2016. Doug and I have yet to decide on a name so for now he will be known as baby boy.
Just after Thanksgiving we found out that our seemingly healthy baby boy has a life threatening congenital heart defect called Truncus Arteriosus. The odds of a child born with TA are less than 1 in 10,000 and the cause is unknown but thought to be due to genetic and/or environmental factors. Only 300 cases of TA are reported each year in the United States and one out of every 10 babies dies in surgery. Truncus Arteriosis occurs when the Aorta and Pulmonary Arteries fail to separate which means that there is one large blood vessel leading out of the heart instead of two and there is also a Ventricular Septal Defect, or hole in his heart which causes the oxygenated and non-oxygenated blood to mix together. We have been told to expect him to be blue and he may have trouble breathing, eating and he will be sleepy because of the lack of oxygen in his blood stream. Babies born 40 years ago would almost certainly die of heart failure within a few months following birth.
Our poor baby boy will need open heart surgery within the first couple weeks of life where they will him on a bypass machine, stop his heart, patch the hole, use what is thereto create a working Aorta and surgically implant a conduit and artificial valve from a cadaver to create a working pulmonary . Survival rates for this surgery are 90% which seems promising but the fact that 1 out of every 10 babies does not make it really puts things into perspective. We were told he will need at least 2-5 additional open heart surgeries to replace the conduit as he grows as well as multiple heart catheterizations and lifelong cardiac follow up.
Since we received the news I have faced an array of emotions including guilt, anger, sadness, grief and gratitude. Our birth plan has changed for obvious reasons and we will now be delivering at Abbott instead of Woodwinds, and we will expect to be there for a month or longer depending on his recovery. We have been told everything else with our son looks normal and he is growing and thriving while he is in my belly, but as soon as he is born he will be rushed off with a team of specialists to stabilize him and I will not be able to see him until I have recovered from labor. Being a parent is not easy, and I break down when my daughters suffer any pain, so this is truly a test of how strong I can be. I am really struggling to accept the diagnosis and every time we go to the Dr. I have a tiny shred of hope they will tell me they have made a mistake, but the is that I must prepare for the difficult road to recovery. I am excited to meet my son in 4 weeks but I am terrified of what is to come. I am so hopeful that we will be best case scenario without complications, but after reading the stories of other families with TA children, I realize that there is so much uncertainty and no guarantees. Our son will have heart disease forever, there is no cure.
Doug and I are thankful to live in Minnesota where there are and surgeons prepared to perform the difficult surgery our son needs. Several states do not even have hospitals or surgeons that can perform this complicated surgery. We are also thankful that we found out before our baby was born because we now have an entire medical and surgical team in place and ready for when he arrives and we can deliver at the hospital where he will have the surgery. We are also thankful that it is 2016 and the survival rates have increased drastically since the first surgery was performed in the late 1960’s. As you can imagine I have been researching this daily since learning what TA was and life expectancy is really unknown since the oldest survivor is in their early 40’s. There is little research on TA since it only accounts for 1% of all congenital heart defects.
At this point Doug and I are taking comfort in the support of friends and family, and the two beautiful and healthy daughters that we have been blessed with. The months ahead will be painful, traumatic overwhelming. Our family is using this Caring Bridge site to facilitate our recovery and keep our loved ones informed on our baby boy’s progress as he enters the world in such a precarious way. We thank you all for your support and love during this difficult period.
I want to make note that the Caring Bridge does accept to maintain the website but our family does not receive any of the proceeds. At this point we have not set up any type of charity fund but I wanted to share our journey with everyone as the delivery date draws near. Thank you so much for reading and I will accept any name ideas since Doug and I can’t agree on anything!!