Wednesday, September 15, 2010

We are now a "2 in 100" family

For those outside the loop, the term "1 in 100" refers to the alarming rate of congenital heart defects among children. 1 in 100 babies are born every day with a CHD. And now, we are a 2 in 100 family.

Yesterday, Sadie was taken to the cardiologist after suggestion from Sawyer's neonatologist from the University of Chicago. We were told that CHD's tend to group themselves in families (sometimes) and that it might not be a bad idea to get Sadie's heart checked out.

When she was 6 weeks old, she was diagnosed with a heart murmur, but we had it checked out and were told it was an "innocent murmur." Apparently, if it persisted we were supposed to follow up. The message was never received on this end. Which infuriates me.

Long story short, Sadie still has a murmur and after an EKG and ECHO of her heart she was diagnosed with a PDA (patent ductus arteriosus) and Pulmonary Stenosis (a narrowing of the pulmonary artery).

Tomorrow we see a pediatric cardiologist at Christ Hospital in Oak Lawn and from there, schedule her surgery to fix the PDA.

At this point, I'm thanking God that this is a very fixable situation. At the same time, as a mother, I can only wonder "why my babies?" I know Sadie's little brother is looking out for her though. Because if Sawyer was never in our lives, we would never know about Sadie's heart.

CHD statistics are alarming and many do not realize that research for CHD's is one of the most underfunded. More children and infants die every day from a CHD than from all childhood cancers combined. Those are numbers that you can't argue with. And numbers that prove we have a lot of work to do, and a long way to go.


Lisa said...

Michelle, it probably wouldn't hurt for you and your husband to get your hearts checked, too. After we got Gabe's diagnosis, we discovered that there is a history of CHD's on my husband's side. Chuck got his heart checked in November '09 and found that he also has a bicuspid aortic valve, just like his mom, uncle, and possibly his grandma. I'm glad they caught Sadie's in time and can fix it. You are all in my thoughts.

Jessica said...

I'm glad that Sawyer got to help out in this way. I'm sure he's watching you and smiling :) (((hugs)))

rebecca said...

How frightening! So glad you guys have caught this and a specialist will be following her, praying that she is in good hands and that the doctors are blessed with wisdom in how to treat her.

Wyatt's Mommie said...

Although Sawyer's life was short, he sure did have a huge purpose.

Thinking of you Michelle!!! My heart aches for you, Erik and Sadie.

Love you!

Stefenie said...

Glad you got Sadie checked out and her issues have been caught in time. I often think of having the rest of us checked for heart issues too.

Pipsylou said...

Because if Sawyer was never in our lives, we would never know about Sadie's heart.


And can I say? I LOVE their names. Trite comment, but I LOVE them!