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 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.
pomelo / 5628 posts
My son was a 25 weeker preemie, not a CHD patient, but so many of the challenges were the same. He had a PDA ligation at 3 weeks old to place a clip on the PDA valve in the heart for a similar but different reasons and we had terrible feeding issues. Your posts bring me back to it so clearly…knowing that we needing to make feeding a positive experience, but struggling the same time with getting the required calories. OT was great and we also have a thriving toddler. Thanks for sharing your story. I’m sure it will help more people than you can imagine.
blogger / pomegranate / 3044 posts
Thank you for sharing your son’s story! It is so familiar to me although the medical side is different.
cantaloupe / 6634 posts
Thank you for sharing your story.
blogger / cherry / 222 posts
Thank you for sharing your experience. I am so happy things turned out well for your family. I hope advances continue to be made.
wonderful pomelo / 30692 posts
guest
What a wonderful outcome of this story. Your story also reminds me of how fortunate we – privledged folks in the US are – to know and feel worthy enough to speak up and ask, demand, and insist on what our children need. Your story is a reminder of what a difference it makes to use your voice and speak up!
coconut / 8079 posts
I have enjoyed reading your story. Thanks so much for sharing. I’m so glad you were able to get the help your son needed and that he is growing and thriving.
admin / watermelon / 14210 posts
Our pediatrician gave us wrong information about early intervention and I’m glad we did our own research or we would have waited longer to pursue it!
persimmon / 1367 posts
Thanks so much for sharing your story. A close friend’s daughter and one of LO’s close cousins both have complex CHDs, I’m always thrilled to hear stories with happy endings!