Like many parents, I didn’t spend a lot of time thinking about congenital heart defects. That changed a little over 13 years ago. It was then, at my 20 week ultrasound, that it was discovered my unborn baby would be born with a severe heart defect called Hypoplastic Left Heart Syndrome, which essentially meant only half of his heart would be the normal size needed to function.
We learned a lot that day. We were told that heart defects were the most common birth defect, that I didn’t do anything to cause it, and it was likely a ”fluke.” We learned that his options were limited, his mortality rate was significantly increased and that we could have a lifetime of unknowns and medical care ahead of us. We were told his best chance at survival would be to have one of three open heart surgeries just days after birth.
After trying to take in all of this overwhelming information, we found ourselves clinging to our faith, our family, our friends, and putting our new baby into the hands of the best pediatric heart team around (thankfully close to our home), at the University of Michigan’s C.S. Mott Children’s Hospital.
Early on, I learned how important it was to surround myself with people who were walking a similar road. I found myself meeting many families during the long days and nights we spent in the hospital. Things happened in these halls. Connections were made, highs and lows were shared, and we all found ourselves trying to cling to hope.
We instinctively referred to ourselves “heart moms and dads.”
Over many years my family learned and re-learned how important the word “hope” really is while being on this journey. Despite some of the grim realities around us, we benefitted so much from keeping our hope alive.
Thankfully, things have become more stable in recent years, and my family has been living life more outside the hospital than in it. My conviction and passion for sharing the hope that I’ve witnessed and clung to, however, is even stronger than when we started this journey.
I have officially been volunteering as a Patient and Family Centered Care Advisor at Mott Children’s Hospital for 6 years now. Most recently, I was asked to pilot a Parent/Peer Mentor program for inpatients within the Congenital Heart Center, and have been doing this for over a year now. Through my weekly visits to the Pediatric Cardiothoracic Intensive Care Unit (PCTU) and 11 West at Mott, I’ve met with approximately 200 heart patients and families (some multiple times). I also connect with families who are outpatients via email or phone.
Typically I receive referrals from the established relationships I have with the Congenital Heart Center social workers, nurses and physicians. I also receive referrals from outside support groups (like Hearts of Hope S.E. Michigan).
When I first visit a family, I introduce myself as a ‘heart mom’ and let them know that I am checking in on them and wanting to see how they’re doing. Almost all of the time, they quickly open up and seem relieved to just talk with someone who has been in their shoes. Our conversations are sometimes brief and other times more lengthy. My goal is to listen, validate, empathize and answer any questions that I can.
Some of the more frequent questions we talk about include:
- Do things truly get better?
- How did you get through?
- How did you handle coming back for more surgeries?
- What about your other kids?
We talk about the importance of taking care of themselves (even if it’s the little things and give examples of what worked for me), joining support groups and realizing they don’t have to feel alone or travel this road alone. If the patients are older, I often visit with them as well and they will often open up with questions too.
While things have been far from easy for my family, there is still great blessing in the pain we have shared on this heart journey. I simply feel called to use the unique perspective I have been given to provide this much needed hope to other families on a road that can often feel so hopeless.
Through the conversations I have with the families I meet at Mott, I have the opportunity to do just that. I walk away from many of the patient rooms I visit feeling as if I was able to share the most important message of all with these heart families….HOPE!
Colleen Schomaker is a wife, a mom to 3 children, an advocate and a full-time caregiver to a child with a chronic illness. She also serves as a volunteer advisor for the Patient and Family Centered Care team at C.S. Mott Children’s Hospital. Colleen also volunteers as Member Relations coordinator for a congenital heart defect support group, Hearts of Hope of S.E. Michigan, and works on various initiatives for the Donate Life Coalition of Michigan and other organ-donation causes. Her son, Tommy, has had six open heart surgeries at Mott Children’s Hospital, including a heart transplant. He is now 13 years old, loves playing basketball for his school, is very active and lives life to the fullest!