Today marks one year since the term Congenital Diaphragmatic Hernia entered our vocabulary. I remember being on hold with the doctor after he told me, and I delivered the news to Eddie that would change our lives forever from the top of the basement stairs, where Eddie’s office was. “Results are in. He has a hernia.”
I’m part of a CDH support group with Breath of Hope, Inc. where this question was asked:
If you had heard of congenital diaphragmatic hernia prior to your diagnoses, do you think it would have made it a bit easier?
My answer? I’m not sure. On one hand, the gravity of the situation would have been immediately recognized. The news wouldn’t have been given to Eddie from the top of the stairs. I probably would have been more prepared for the range of possibilities that could come next. But then…August 12, 2011 was my last day of blissful ignorance. Until then, I didn’t know what a congenital diaphragmatic hernia was, nor how serious it could be. For a long time I wanted to go back to the afternoon of August 12, 2011, right before my phone rang. Sometimes I still do.
I waited to ask Dr. Google about CDH for a day. The doctor had scheduled a conference for Monday, and I’d intended to wait until then, but I made it until the next day.
Dr. Google is rarely kind, and this was no exception. I found pictures of babies hooked up to machines that overwhelmed them. Wires and tubes and tape covered their tiny bodies. I read about longterm problems associated with CDH. I found many blogs, ranging from nearly complication-free (aside from the CDH itself, of course) to the worst case scenarios. My heart broke for the CDH babies who chose wings and even then, I couldn’t imagine the pain the parents must have been experiencing. How did they manage to cope? Where did they find the strength to get out of bed in the morning? To go to sleep at night?
This blog shows some visitor stats, including search terms that lead people here. Sometimes the search terms are so obviously from people who are just finding out that their lives, too, are about to change. Seeing these search terms – directly from my stat history… mild cdh story, cdh survivor stories, severe cdh stories, should i go to chop for baby with cdh, what effects does cdh have on teenage years, should we have an amnio for baby with cdh, can a cdh heal before birth, can cdh diagnosis be a mistake, labor with cdh baby, it just makes me wish I could trace back to them and tell them it’s going to be okay, no matter what happens. Coming from someone who knows what it’s like to witness the worst case scenario…it will change you, but you are going to be okay.
I feel awful because I think, these are people who may have just found out that their baby has a CDH. They’re looking for hope. They want to know that their baby is going to make it. And they found out, just as I did, that sometimes…CDH babies don’t make it…for various reasons.
And the most heartbreaking one yet, one of the ones that brought tears to my eyes when I saw it: am i doing it right by putting together a nursery for a cdh baby? Yes. Yes, you are, as long as it’s what feels right to you in the moment. Your child is special, their situation is unique, and the outcome will not be exactly the same as anyone else’s. We planned on Benjamin coming home until the very end and while it hurt to put away his things — and again take them out for his little sister, knowing those things were intended for him — I don’t regret the plans we made for him. You always want the best for your children, and medical complications don’t change that. Always plan for the best case scenario.
One other piece of (unsolicited) advice: Keep a blog. Even if you keep it private, although the support we’ve received from friends, family, and strangers has been such a blessing. It helps to have a place of your own to get your thoughts out there, keep track of what’s happening, and, if nothing else, it will become your song for your child. Writing/typing this story — this song — has been the most helpful form of therapy, and continues to be so.
Today marks one year since the diagnosis. If you had asked me one year ago, before that phone call, where we’d be today…I wouldn’t have seen any of this coming. If I had, I wouldn’t have told you I’d be okay, but I am. And I certainly wouldn’t be telling you my daughter would be a month old tomorrow.
I know babies are supposed to get bigger, but really? Slow down, little one.
Below is the blog post from my separate, private pregnancy blog for Ben. It was posted the day after finding out about the CDH.
Today, Benjamin and I had an MRI – a first for both of us. Starting at about 20 weeks, the doctors started to notice that Ben’s heart is being pushed leftward by some unknown cause. He had a generous amount of fluid in/around his lung, so they were betting on that being the cause. I wasn’t crazy about the idea of a chest tube or other kind of aspiration because I didn’t want my brand new baby to be in any pain, but now I’m wishing that was the worst of it. During the last two ultrasounds, they noted that the fluid had decreased substantially – which is great! – but his heart is still leftward. This problem is in addition to his abdomen lagging behind in growth, so the doctor began to suspect that there might be a diaphragmatic hernia. Being unable to rule it out via ultrasound (due to unclear images), he sent us for an MRI.
While this is an incredible image to have of our unborn son, the MRI itself uncovered that he does have a diaphragmatic hernia. What does this mean? Well, things just got complicated.
The reason his heart is being pushed leftward is because something, and we don’t know yet what it is, passed through a hole in his diaphragm. Whatever it is (we’ll find out Monday, I hope), it’s supposed to be in his abdominal cavity – but it’s next to his heart instead.
Here’s the part that kills me:
The only way this can be fixed is by surgery…very shortly after he’s born. Then he’ll stay in the NICU for a while to recover. Weeks at best, perhaps longer…depending on the severity of the hernia and how steadily he recovers from surgery.
His chances for survival are greater than his risk of not making it, so that’s what I’m holding onto. It’s frustrating that the potential complications seem to be neverending, but there’s a certain amount of relief that comes with knowing what’s wrong ahead of time. I’d rather find out about this in utero via MRI than through an autopsy. With this information, we can prepare ourselves and the doctors can be ready for him, rather than scrambling as he struggles to breathe. So that’s a positive.
I really think he’ll be okay, but it’s not knowing that scares me the most. This is just a giant hiccup.
I’ll have more information on Monday after we meet with the perinatologist and neonatologist and will update then.