When Dylan was born, he did not appear to be in any distress and was eating and sleeping like a normal baby, but if Dylan had not received a pulse ox screening before we left the hospital, he most likely would have died of congestive heart failure within 72 hours.
I had no idea that congenital heart disease (CHD) was the number one birth defect. In fact, approximately eight per every 1,000 babies are born with a form of CHD and about 280 outwardly healthy babies are discharged from hospitals every year with unrecognized CHD.
We experienced serious emotional ups and downs after we learned about Dylan’s CHD diagnosis, waited for surgery, and then struggled through a difficult recovery. After going through this journey with Dylan, I feel very strongly about supporting other parents and caregivers during their hospital stay and the transition home.
Testifying Before the DC Council
I hope my family’s story can be an inspiration to other parents as Dylan’s life is truly a gift. I had vowed if Dylan survived his surgery that I would take all of the emotion I was feeling at the time and give back and advocate for pulse ox screenings. Testifying in front of the DC Council on February 2, 2015 was one of those moments where I realized the true impact our family’s story could have on legislation and in helping other families through similar journeys.
No mother should have to lose a child to CHD because an inexpensive and quick pulse ox screening was not performed after birth. It is vitally important that you ask that your baby receive a pulse ox screening.
If you happen to deliver in a state or the District of Columbia where pulse ox is not yet mandatory, ask your care team to administer a pulse ox screening prior to discharge from the hospital. In fact, I personally ask that Dylan get his pulse ox read every time we go to the doctor’s office for a sick or well-child visit. It does not hurt the children, costs virtually nothing, and can only give you peace of mind.
This is going to be scary at times and overwhelming and you may feel totally out of your element, but remember that your child is depending on you to make sure that they get the best possible care. The doctors and nurses at children’s hospitals around the country are amazing and wonderful, but remember they have lots of patients and you only have one.
Be an advocate for your child – be involved in his or her care, ask as many questions as you need until you understand what is happening with your child’s care, and attend rounds in the morning as much as humanly possible to know what the medical plan is for the day. Other tips:
- Ask if your baby will receive a pulse ox screening before being discharged from the hospital
- Write EVERYTHING down, and I mean everything
- Ask for business cards of new doctors who come in to check on your child
- Ask your social worker for help navigating through this journey
- Seek help and support where you can
- Ask about Mended Little Hearts and get connected to other parents and caregivers who are going through similar journeys with their children. It’s much less scary when you know that you are NOT alone.