a little update on mia | CDH awareness

Mia's follow up appointment with the surgeon Wednesday was uneventful - vitals were taken, scars inspected, and lungs listened to. Five minutes later, she was confirmed a healthy little girl and cleared for another year before following up again. She had two x-rays of her chest, which she was NOT happy about and that required both Ryan and I to hold her still, but were (quoting Dr. G*), "Perfect. You would never know anything was ever wrong."

I heard those words over the phone Wednesday afternoon, and I couldn't help but think, "How is that even possible?" It truly is amazing.

Before leaving for home, we stopped by the NICU to share pictures of Mia with the doctors and nurses, and received the warmest welcome you can imagine. We saw some of Mia's nurses, and the front desk personnel who watched us enter and exit NICU several times a day for nearly a month. We also saw Dr. S*, who was the attending doctor when Mia arrived that day in July. She is a petite woman, maybe five feet tall, but so very big in our hearts. She had stayed up with Mia that entire first night and into the next doctor's shift, ultimately making the decision to put Mia on ECMO, and I have no doubt in my mind that this woman saved our daughter (with the help of her team of nurses and doctors, of course). I remember so clearly walking into the NICU that first morning, seeing how tired Dr. S* looked and feeling sort of shamed for having gone to bed the night before for a few short hours of sleep. I am forever grateful for her determination to save Mia and for her knowledge of the human body. It was such a sweet moment to be able to show her how well Mia is doing now.

So often, when people meet Mia for the first time (those who know her medical history), they say, "She looks so normal." And yes, she does look normal. CDH babies do not exhibit identifying physical characteristics like, for example, a baby with Down Syndrome. Assuming the CDH is repaired successfully, the only defining characteristic is a few scars. But more than that, I think people are surprised by how healthy she appears - pink, chubby, active. And it's true, she is unbelievably healthy. Mia has been very blessed to have beaten CDH relatively easily.

I think it is important to point out that Mia is an exception to the rule with CDH.  Sometimes, I'm afraid that her health diminishes the seriousness of the defect. The mortality rate of these babies is 50%. HALF die. And of the half that survive, so many of these babies have chronic lung issues, require multiple surgeries, experience gastrointestinal problems, and even have developmental issues. I can't stress enough how fortunate Mia is to not even be on a single medication, and that this is not a typical outcome.


Occasionally, I visit various websites and blogs related to CDH (congenital diaphragmatic hernia). I don't visit long because it inevitably leads to me crying. Words like ECMO and pulmonary hypertension take me directly back to a time and place filled with uncertainty, fear, and sadness. I'm so very thankful our girl is healthy, but sad that so very many other babies are not. My heart aches as I relive the pain these other parents are going through, and obviously, this isn't the best way to pass my time.  But these websites serve a very valuable purpose, and that is to raise awareness of a defect that, it seems, very few people have heard of.

In keeping with that purpose, I'd like to share some links related to CDH.


CHERUBS is a non-profit organization, started by Dawn Williamson, mother of a CDH baby, that raises awareness, promotes research, and provides support to families of CDH babies. To read a great article about how CHERUBS was started go here, and to see a video of the little life that inspired Dawn to start CHERUBS, go here.  Get your tissues, you'll probably need them.

When we met with the NICU doctors before seeing Mia that day in July, I remember one of them telling me, "This isn't your fault. There is nothing you could have done to prevent this." It was slightly reassuring, but I felt like (and still do feel) there is something he left out of that sentence.

"That we know of."

Research is being done to determine the genetic and environmental causes of CDH, but there are not very many answers to the questions, "Why does this happen? What causes this?" CHERUBS is circulating a petition to increase research of CDH, and has a goal of 10,000 signatures by April 19, which is International CDH awareness day. Would you please take a minute and sign the petition here?  Additional information about what the petition is asking for can be found at the link.

Thank you!