Monday, September 20, 2010

When bad news hits twice

Around this time last week, we discovered that our 2-year-old daughter had an undiagnosed PDA (Patent Ductus Arteriosus). Not a particularly alarming congenital heart defect, but after losing our son in June to TOF (Tetralogy of Fallot), I was beside myself with worry and concern for Sadie.

Sawyer in the NICU

When we revisited Comer Children's Hospital to meet with Sawyer's neonatologist after he passed away, one thing she said to me had stuck out among all the medical terms and tears. She suggested that it wouldn't be a bad idea to get Sadie's heart checked out, as congenital heart defects tend to group themselves in families.

Shortly after Sadie's birth, she began to have her share of troubles too. In the NICU for a few weeks and on a ventilator - she fought very hard and made huge strides every day. But,one thing I never thought twice about was her heart. We were told she had a murmur and that most babies outgrow them and that they are most often "innocent."

Sadie in the NICU

When the cardiologist began listening to her heart last week, I was taken by surprise when she mentioned the murmur again. Her pediatrician hadn't said one word about it at any visit we've had in over two years.

As the appointment continued, Sadie had an EKG and finally, an echocardiogram.

Sadie was a trooper and was sitting in her pull-up on the exam table, coloring while the cardiologist informed me that she indeed had a PDA and narrowing of her pulmonary artery (Pulmonary Stenosis). Thankfully, her PDA doesn't need to be repaired surgically at this juncture in her life. She will continue to be monitored each year for changes and eventually it will be repaired.

I never would have thought twice about Sadie's heart if it wasn't for the suggestion from Sawyer's doctor.

According to the American Heart Association, "the risk of having a child with congenital heart disease is higher if a parent or a sibling has a congenital heart defect."

Most parents of heart babies struggle to come to terms with the often scary diagnosis of their infant or small child. And often, other siblings can be overlooked in the craziness that is the life of a CHD family. As mothers and fathers, we have instinct for a reason and I've talked with so many parents who question whether or not their other children should be seen by a cardiologist. No one wants to hear bad news twice, but we also want to do what is the best for our little ones.

In sharing our story, I hope this helps one family that may be struggling to make that difficult choice an easy one.


Jessica said...

I am glad that the doctor suggested you get Sadie checked out and that they can now keep and eye on her. :) Thinking of you! <3

Kathryn @ Expectant Hearts said...

Thank you so much for sharing this. I am sorry for your loss. We lost our youngest son to HLHS at 6 1/2 months of age. I have wanted to get the older kids checked out but just haven't (it's been almost 2 years). The pediatrician does NOT support my desire BUT I know the pediatric cardiologist does as they also agreed it wouldnt be a bad idea shortly after Seth passed away.

I am going to use this as some motivation for myself. Thanks!!

Michelle said...

@Kathryn - Our pediatrician was the SAME way. She was giving me hassle about wanting an echo of her heart. I eventually said "screw it" because we have a PPO plan and decided to go on my own. Glad I did.

Michelle said...
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Wyatt's Mommie said...

I am so glad you are sharing this. I will be demanding a fetal echo with any next pregnancies. Sawyer and Wyatt both had a purpose, this was it! Love you boys.

brigette said...

Wow your right most often the others get left behind.. how brave you are for sharing this. Sending hugs today!

Missy @ It's Almost Naptime said...

Michelle, I am just so sorry. One of my BFF's Mitzi, her son Christian was born still on July 11. The autopsy just came back last week: no reason. He was perfect. He was beautiful. He just died.

All I can say is that it all sucks in about a billion different ways.

Praying for you tonight.

TanaLee Davis said...

Hello, My name is Felicia.
I found your blog from reading your comments on
When I read your blog from top to bottom I cried and lauphed you remind me of myself all too well.
I have a storey of my own and you may read it on my blog at: I understand the loss that you suffer and I would like to continue with you in your journey.
Hugs~ felicia

Wyatt's Mommie said...

Love you Michelle... Check out my blog, I honored this blog with an award.

Amanda said...

I just wanted to thank you for inspiring me to start my own blog. I always look forward to reading what you're up to and value your strength and viewpoint on this path through life. I acknowldged you with a little blog award. You can see at my blog:
Much love, Amanda