Theresa Erazmus of Durham, pregnant with her second child, knew something was wrong as soon as she was told to meet the doctor in a conference room after a 18-week checkup. The family learned that the baby had congenital diaphragmatic hernia, or CDH. Maybe you haven’t heard of it, but CDH, a birth defect in which the diaphragm does not form completely, allowing organs to move out of place and affecting their development, is as common as spina bifida and cystic fibrosis, affecting about 1,600 babies born in the U.S. each year.
We talked to Theresa about her son, Will, and how the family copes with the effects of CDH with an eye toward enjoying the little things in life.
Q: Tell us a little about yourself, and about your family.
A: I am a speech-language pathologist who worked for one year in the Triangle before having my daughter and deciding that being a stay at home mom was the right decision for me and our family. Things seemed great overall. With one child we enjoyed traveling and visiting family up North. We always knew we were going to expand our family, and I once again found myself pregnant. At 18 weeks gestation we were ready to find out the gender of our baby. When we were told to meet the doctor in the conference room, instantly we knew something was wrong. Here we learned of three little letters that would change our lives forever, CDH.
Our baby boy was diagnosed with a congenital diaphragmatic hernia, a birth defect in which the diaphragm does not form completely. His liver and intestines moved upward into his chest cavity, crowding out his heart and lungs, leaving them little room to grow. The chance of our baby surviving was 50%, which went down to 20% when more testing showed he was a more severe case. We are happy to say he is a strong fighter and will be turning two in April.
He fought through 15 days on a heart-lung bypass life support machine, nine surgical procedures, 4 1/2 months in the NICU at Duke Children's Hospital, as well as five additional hospital stays at Duke in the following six months. And throughout all of this we had a 3-year-old at home for whom we needed to keep life as "normal" as possible. A new baby in the family is a tough adjustment in and of itself, but a new baby with numerous medical issues made it even more challenging.
Q: You have a lot of therapy appointments, treatments and other daily tasks that many families don’t. How do you keep things as normal as possible for your family?
A: My husband and I both come from very loving and supportive families. Their help has allowed us to keep our daughter's routine as consistent as possible. Will's therapists have all been so wonderful in involving his big sister, Olivia, when she tags along. Our life may not be "normal," but it has become our "new normal." We may be busy during the day, but we always make it a point to sit down and eat dinner as a family. Will feeds through a feeding tube and is not yet eating by mouth much, but he will join us, sit in his high chair, and play with a toy or try different tastes of our dinner if he is feeling up to it. We feel very blessed to be so close to the coast as it allowed us to go on vacation last summer with peace of mind that Duke was only a short drive away if needed. It was a nice doctor- and therapy-free week to just have fun with our kids.
Q: Your mother-in-law told us you’re cheerful, positive and an “amazing mom.” How do you keep on the bright side on harder days?
A: CDH is a tough diagnosis with a very scary survival rate of 50% overall. We have heard of so many families that have had children with the same diagnosis that were not quite as lucky as our son Will. Having a little miracle running around and smiling day after day makes me feel very blessed. After seeing your child suffer through very difficult life-threatening issues, you truly learn to appreciate the little things. For example, I will never forget when Will came off oxygen and I could hold him and walk with him from room to room or spin in a circle and not worry about getting tangled with the oxygen tank or cord. These were things that I took for granted with my daughter. Every step of progress Will makes keeps us pushing through the harder times. We are not willing to give up on our little boy who continues to fight with a smile.
Q: What do you wish people knew about CDH and what your family is experiencing?
A: I would like people to know that CDH is a lifelong battle. Will overcame so many obstacles in the hospital but coming home did not mean he was better. Will came home on oxygen and a feeding tube. He was re-admitted to the hospital numerous times during his first year for pneumonia, respiratory distress, retching and feeding issues, as well as bacteremia and endocarditis. He is on multiple daily medications and breathing treatments. Will attends physical, occupational, speech and feeding therapy weekly. He continues to battle horrible reflux, a common side effect of CDH, and retching and difficulty with weight gain and growth. There is always the worry and fear of reherniation and bowel obstruction, both of which are common among children with CDH. In addition, Will is more susceptible to illnesses and has difficulty fighting them off with his damaged lungs. We have constant medical thoughts running through our minds daily on how to keep Will moving forward and making progress, something I wish I could turn off every now and then.
I would like people to know that CDH is as common as cystic fibrosis and spina bifida, but there is little research and awareness nationwide. Luckily, there is a wonderful CDH nonprofit based right here in the Triangle called CHERUBS (http://www.cherubs-cdh.org) that helps raise awareness and support for CDH research and offers support to families facing the fight against CDH. We are very thankful for all of the organization's efforts.
I would also like people to know that CDH has changed our lives completely. My husband and I find it very difficult to find time to socialize with friends. It is also much more difficult to find a qualified nurse to take care of Will in order to have a night out. There is no "lets just get a baby-sitter" anymore.
We typically need to "hibernate" during the winter months because when Will comes down with a cold, it could land him in the hospital. We have had to stay away from certain places and activities for fear of germs and getting sick.
Q: What's your favorite thing to do with the whole family in the Triangle?
A: We have a few favorite things we like to do in the Triangle as a family. One of them is spending the morning at Duke Gardens: Feeding the ducks, taking a walk, playing catch, blowing bubbles, and enjoying a picnic. We have truly learned to enjoy the simple things as a family.
Q: What's your favorite thing around here to do when you get a few hours to yourself?
A: A few hours to myself?? What's that?? :) Actually I do enjoy a glass of wine and dinner with friends for a girls night out.
Q: What's the best advice someone has given you about being a mom?
A: Take time to live in the moment and tell your children you love them every day.