My CDH Awareness Day

~I penned this as a Facebook note, but wanted to share on my blog too…

4 years ago today I heard the words congenital diaphragmatic hernia for the first time.

But it wasn’t.

A few years earlier I had a wonderful PT who mentioned to me that she had had a baby that died.

I don’t remember if she used the words CDH then, but after Finley came home she would reach out and tell me Olivia’s story again.

Since I first learned who to say the words congenital diaphragmatic hernia correctly, I have learned so many things…

I learned that 67% (a new updated % up from 50%) of babies diagnosed with CDH don’t make it home… 1 in 2,500 babies is diagnosed with CDH which is as common as spina bifida or cystic fibrosis.. yet still most everyone has heard of those. It is my understanding that CDH receives about $10,000 from the NIH in government funding towards research.

My daughter was born, fought for 49 days in the NICU and she came home. I will NEVER take that fact for granted.

Many families that we walked with during that time and since then, did not have the same ending.

No 2 CDH journeys are the same. We hear that again and again. There are babies diagnosed in utero, hours after birth, days after birth and even weeks after birth. Some children come home on vents, on feeding tubes (for weeks, months, years, or a lifetime), some babies come home and lose their fight with CDH at a later date. Those are the ones that haunt me. This invisible arm of CDH taunting that maybe we are never truly safe from it’s reach. What causes me to go in my daughters bedroom each night and check if she is still breathing. Even though, now, four years later, looking at my daughter you would have no idea of what she went through her first few weeks of life.

I felt the power of prayer and experienced God in a way I never had before. And I have been brought to my knees seeing God in other’s journey’s. I can never forget how the Holtrop’s sang worship over Esther as she died. That forever is burned into me as such a powerful statement of God’s love and their love for God even in the midst of their greatest loss. She is among the angels that I can never forget.

The parents of CDH children are forever changed by our experience. I have seen compassion and love so great between these amazing parents. Moving from having been supported to supporting, and back and forth, since CDH likes to rear it’s ugly head when you least expect it. Whether it’s a ER visit because your child has gotten a cold that wouldn’t be an ER visit for a child with regular lungs – but because CDH children have undeveloped, fragile lungs – we fear the germs most parents have the luxury of being nonchalant about. Or the battle to get their child to gain weight. We reach out and share our stories and experiences and try to help each other through a journey that isn’t like everyone else’s. Thank you to my CDH family.

We have 2 awareness days and MANY groups working towards awareness and raising money for research and to help families. While I wish there were just one agreed upon date, the more people fighting the good fight, the better in my book.

Whatever day is your CDH Awareness Day, it doesn’t really matter. In the end, all that matters is that there IS CDH Awareness. That there is money going to research and towards helping the families that need it. There are so many amazing research studies going on right now;

-Stem Cell research (from amniotic fluid) to GROW human diaphragm so these babies don’t have a patch that will tear and require multiple surgeries.
– Research in methods to treat pulmonary hypertension which is the CDH related complication that kills a majority of these babies.
-Genetic Research to figure out WHY this happens. They are seeing some genetic reasons in some families – but in others (like ours) still no understanding of what caused the defect.
-and so many more.

What can you do to help? Spread awareness – anytime.. today, all of April, April 19th – it doesn’t really matter. Give money towards research. It can be to the Ladybug CDH Foundation, to Breath of Hope, to Cherubs – it can be directly to DHREAMS, or Boston’s Mass, or UTHealth, to Randall Children’s or UCSF to name but a few – JUST GIVE towards helping these babies. Give blood – these babies require lots of blood while they are in the NICU. Tell one person about CDH.

4 years ago TODAY, I was told my baby had CDH. Ironically, it was also a national awareness day. In some states, if you get them to issue the proclamation, which you have to “renew” each year. I didn’t send it in this year for Oregon, so I guess it’s not CDH Awareness Day this year. But it will forever be my personal CDH Awareness day. For other families, it is the day that they got their diagnosis. We each have our own personal awareness day.

Today is mine.