As mothers of CDH Warriors, we fight battles right along with our babies. We’ve had to handle a tough diagnosis with hormones in full swing, tried to reconcile our excitement over our new baby with our fear of the worst, stayed bedside day and night, sometimes standing for hours-long stretches, just hours and days after giving birth and we’ve learned more about anatomy, medicine, feeding tubes, procedures and the medical field in general than we ever thought we would. Some of our CDH Mamas have had to say goodbye to their babies and others will live the rest of their lives waiting for the other shoe to fall. As CDH mothers of survivors and angels, many of our battle wounds never heal. But we soldier on, always thankful for the positives our babies and children bring us and always with a heart full of faith, love and hope.
This week, in honor of Mother’s Day, Seattle Children’s Hospital shared stories about mothers who have found hope through their child’s difficult diagnosis and become advocates for other parents and families. Kara, one of our Washington State CDH Mamas, and her son Alden were profiled for this series. Click here for their story of hope through Alden’s CDH journey. This Mother’s Day, we honor the strength, tenacity and bravery that it takes to be a CDH Mama.
Here’s to all the CDH Mamas!
Nolan’s Big Race!
We’re so lucky here in the Pacific Northwest to have such a tight-knit group of CDH families. Our group is always there to answer a question, validate a feeling, share a parenting moment or just listen. But one of the coolest things about this community is that we all get to cheer each other’s kids on! And boy do we have a reason to cheer for little Warrior, Nolan! Next month Nolan will be participating in the Disneyland Diaper Dash. What a miracle to see this little guy cross the finish line and what a great opportunity to spread awareness for CDH! You can read more about Nolan and the race here. Help us share Nolan’s story! #GoNolanGo
I used to be a 31-year-old educated woman who did not really know what a diaphragm was for. I didn’t even know how to spell it. That all changed on December 13, 2011.
My husband and I were expecting our first child. For the third time. After two miscarriages, we had made it to 20 weeks and were thrilled to finally exhale. We went to our 20 week anatomy screening ultrasound hoping to hear that we were having a healthy baby boy (we just knew it was a boy). Our first shock came when the tech announced “It’s a GIRL!” But then she spent a long time, without explanation, capturing images of the baby’s thorax. We exchanged glances, but mostly just joked about having to look into boarding school when she’s a teenager in case she’s anything like Mommy. We left the appointment feeling uneasy, though neither of us really discussed the feeling. We went to buy a few girl clothes to celebrate and called, texted and emailed friends and family. That evening, my doctor called. I don’t remember exactly how the conversation went. I sort of remember it in pieces: congenital diaphragmatic hernia… hole in the diaphragm… intestines, stomach, liver in her chest cavity… heart looks functionally fine but has a small hole… surgery after birth… appointment tomorrow with maternal fetal medicine. Read More....
Jarom's CDH Story
All to often, unfortunately, the people who have time to document their results are those who have lost their children. This was very foreboding. I am not a doctor, I am a father of a CDH survivor. By trade, I am an engineer and as such my information is from that perspective. I looked at the numbers, the trends and the patterns.
If I have any advice to give it is to immediately engage your health care professionals and develop your options. Time is exceedingly crucial. Check out Jarom's personal site http://www.cdh.embarqspace.com/
If you have a CDH Story you would like to share, please email it to firstname.lastname@example.org