Today’s blog is an incredibly special one, friends. I had the privilege of capturing the Jorgenson’s family photos. Anna and Jan’s son, Truman, was born with a congenital heart defect (CHD) called Hypoplastic Left Heart Syndrome. In honor of this week being Congenital Heart Defects Awareness week as a part of the American Heart Month, Anna and Jan are sharing baby Truman’s story.
I was able to take their maternity photos as well and it was so sacred for me to be there, knowing that they had this huge trial ahead of them as soon as he was born. Just watching them together as a little family knowing how far they have come tugs at my heartstrings! All the sleepless nights in the hospital, the surgeries…the fight has been a tough one for this little warrior and his family. Get to know this mighty warrior family below!
Truman was born with a congenital heart defect called Hypoplastic Left Heart Syndrome. This means the left side of his heart was severely undeveloped. Babies with HLHS will not survive without a series of 3 major open-heart surgeries or a transplant. However, surgery is not a cure. CHD is a lifelong disease requiring ongoing specialized care.
In many children, this disease occurs by chance. Nearly 1 in 100 newborns are born with a congenital heart defect and is the most common birth defect.
We were so eager to be parents for the time and found out at my 20-week appointment that our baby wasn’t healthy. As you could imagine, the next 20 weeks of my pregnancy were hard.
We kept pretty quiet and only told close family and friends. I couldn’t talk about it without completely losing it. I don’t think there’s any way to truly prepare for having a child that will be born with a life-threatening disease.
Truman had his first surgery the “Norwood” at just 4 days old and the second surgery the “Glenn” at 4 months old. The final surgery is the “Fontan” which normally is done between 2-3 years of age. This is if everything goes according to plan. The extremely hard part about CHD is things can change very quickly and for the worst. We don’t know what the future holds for our little man, but it has given us a new perspective that everyday we have with him is a precious gift. He is our living Miracle.