It takes your breathe away - Seven Hearts Series

Welcome to the sixth day of Seven Hearts in Seven Days - if you are looking for more information on Congenital Heart Defects or how to get in on the giveaway - check out last Saturday's post.

Today's post comes from the Clinkscales Family

I feel very privileged that I have been asked to write about our family’s heart story to help spread awareness of CHD. I have kept a blog for our family since our son was diagnosed with CHD so I thought it would be simple to write our story. As I started writing this post I realized just how hard it is to explain everything we have been through during the last year and a half. We have had MANY ups and downs during this time but as I write this post I can thankfully say our son is doing very well at the moment. My life has changed over the last year and a half but I feel that it has changed for the better. I appreciate every single moment with my son and every single breath he takes.


I will do my very best to tell our story….

I scheduled my 20 week ultrasound on my 30th birthday. I thought finding out the sex of our baby would be the best birthday present ever. However, we ended up finding out very devastating news that day. We found out that our unborn son had several severe congenital heart defects. We learned that he had Hypoplastic Right Heart, Tricuspid Atresia, Transposition of the Great Arteries, ASD, VSD, and a small aortic valve. We also learned that he would need a series of three heart surgeries to survive. I can not explain how sad we were that day. We told our parents but it was weeks before we had the strength to talk to other friends and family. It was more than we thought we could handle.

On January 29th, 2009 our perfect little angel entered this world. Since we had many months to prepare for his birth I knew I probably wouldn’t get to hold him and that he would be rushed away to the NICU. What I wasn’t prepared for was for Cain to not be breathing at birth. There are no words to explain how sad it is to not hear your baby cry and to learn that your baby wasn’t breathing. The NICU team intubated our son and rushed him to the NICU. They briefly held him up just long enough for me to get a look at him before taking him away. It is a moment I will never forget.

When Cain was 6 days old he underwent his 1st open heart surgery which was called the Norwood operation. It is still so amazing to me that they are able to operate on such a tiny heart (basically the size of a strawberry). Thankfully they can and thankfully our son was given a chance of survival. After Cain’s surgery he remained in the hospital for several weeks and on February 17th he was finally discharged from the hospital. We had a wonderful first week at home only to have to return to the hospital for another two weeks due to GI bleeding Cain was experiencing. .

On April 3rd Cain had a heart cath and then on June 5th underwent his 2nd open heart surgery (the Glenn).

We had a few bumps in the road with this hospital stay and had to stay a little longer than we expected but on June 16th Cain was once again discharged from the hospital.

Currently Cain is doing very well. I tell many people that you would never know what all Cain has been through if it weren’t for his many scars on his chest. Honestly, it is still hard for me to even comprehend what all he has been through. For the first several months of Cain’s life he was seen by his cardiologist every week. Now he has appointments with his cardiologist every 6 months. During his last appointment, we were told that Cain will more than likely undergo his 3rd open heart surgery (the Fontan) during spring/summer of 2010 around the time he is 2 years of age. I would like to think that the Fontan surgery will be his last open heart surgery but there is no way of knowing. We have been told that he will probably have another heart cath a year after his Fontan surgery to close a fenestration hole that will be left open during the Fontan. We also know that Cain’s left pulmonary artery is very narrow and will probably need widening as he grows. This would mean he would need additional heart cath’s later in life.

I wish I could say I knew what the future holds for Cain but his long-term prognosis is truly unknown. So far we have seen many miracles in his life and I pray every day that we see many more. Every heartbeat Cain has is a gift and we are so thankful for his gift of life!

To follow Cain’s heart journey please feel free to visit http://www.clinkscalesfamily.blogspot.com/ . I love meeting other heart families. And I also hope that Cain can bring hope to families that may be going through what we went through when Cain was first diagnosed with his heart defects.