Hellobee

This is Part 5 in a guest series by Hellobee community member C. You can read Parts 1, 2, 3, and 4 here.

From the first day of his life, our baby struggled to eat. Like so many babies with a CHD, his lung functioning was compromised. The fluid building up on his lungs created the sensation of drowning every time that he tried to breastfeed or take a bottle. His feedings were not a time of comfort and bonding, but a necessary evil.

Even though we knew he was struggling to eat before and after his surgery, the consensus among the doctors at the time was to address these problems later. His health was barely stable, and it was important for him to keep gaining weight.

By 8 months old our sweet baby boy’s heart was healed, and he had made great progress. However, it was clear he had some physical delays; more alarming were his feeding issues. Now that we were trying solid foods, it became apparent how badly he needed help. He would gag and choke on any solid, and was still struggling with drinking fluids.

We had originally contacted Early Intervention (EI) when he was 6 months old but they recommended we give him more time to catch-up. At 8 months old, we did not want to wait anymore. Because he had a simple congenital heart defect and not a complex heart defect, he didn’t automatically qualify. It didn’t matter that his defect was so severe that his symptoms and medical history mirrored a baby with a complex heart defect. Nor did he qualify for feeding issues, because he did not have failure to thrive. In fact, he was steadily gaining weight due to our diligence.

The EI Coordinator explained that there are basically two ways to qualify for services. The first was to be a certain percentage delayed in all areas assessed: physical, cognitive, social-emotional, speech and language, and adaptive skills. Our son had mild delays and likely wouldn’t score low enough across all categories. The second was to be severely delayed in one area. Feeding skills were considered part of adaptive skills. He could potentially score low in feeding skills, but the other adaptive skills in this area would bring the score up. The EI Coordinator explained that if he didn’t qualify, it would be another 3 months before he was reassessed.

I felt stuck. It was like my sweet baby boy was being penalized for working so hard and making progress. I called a family member trying to figure out what to do next. They let me know that we could request an EI assessment every month; the 3-month wait was a recommendation not a requirement.

I contacted the EI coordinator the next day and explained that we wanted to move forward with his EI assessment. If he didn’t qualify we would request an assessment every month until he improved on his own or qualified for EI. We were not trying to be difficult, but we just didn’t know where else to turn to for help. For her part, I don’t think the EI Coordinator was trying to be difficult either. I genuinely think she didn’t understand our situation and how badly our son needed help.

Finally, the EI Coordinator relented and explained that we could try a Clinical Judgment. This option allowed for an Occupational Therapist (OT) that specialized in feeding therapy, to assess our baby’s feeding skills. If the OT determined that his feeding skills were delayed enough, they could recommend EI services based on their Clinical Judgment despite the assessment scores being too high to qualify. We welcomed the opportunity for the feeding assessment.

We were so fortunate to have such a knowledgeable and experienced OT assess our son. She immediately saw major delays with our son’s eating patterns and assessed his skills to be in the newborn and 0-3-month range. She was concerned he was in danger of aspirating and recommended EI services. Our son qualified for EI based on her clinical judgment.

We began once a week feeding therapy and had our eyes opened to the complexities of feeding. We needed to strengthen the muscles in his tongue, cheeks and jaw. As well as improve the coordination of all his mouth muscles. She introduced us to feeding tools like resistive straw drinking, z-vibe, and chew tubes.

Our OT also noticed his low tone and sensory issues that were likely due to his medical history, so she incorporated some physical therapy exercises and sensory tools to address these as well. We worked hard, and made sure to keep his feeding experiences positive. Before long he began to make great progress. It’s such a relief to know that our baby is no longer distressed when he’s eating. We still rely on our OT’s invaluable knowledge and guidance to help our son keep progressing.

Parenting a baby with a serious medical issue has taken a huge toll on us mentally, emotionally, and financially. It has impacted all aspects of our life. The only way for us to get through these uncertainties, fears, and pain was for us to have faith that things would get better and gratefully, they have.

Our sweet baby boy is now a thriving toddler! He is no longer delayed and he is testing above average on his assessments. Our listless newborn has turned into a running, climbing, laughing, toddler who brings so much joy into our lives.

Our son’s story is unique, but please remember that his CHD diagnosis is far too common. I was extremely hesitant to share our story but I’ve been continuously inspired by other heart parents like the parents before us, who lost their babies to CHD, but through their advocacy have spared us the pain of losing our son. And by another heart mom we met in the hospital, whose baby received a heart transplant the same day my son was born. Her daughter should have gone on to have beautiful life, but her baby didn’t make it, and mine did. Her sweet baby girl reminds me that there is still so much progress that needs to be made for CHD.

It’s been almost a year since our son’s surgery, and we find ourselves spending less time at therapies and doctor visits and more time at parks and story times. My husband and I are enjoying the gift of watching our beautiful kids grow up. Our kind and precious 4-year-old girl, and our sweet toddler boy, who just happens to have a congenital heart defect.