Along with opportunity to meet new families through Mended Little Hearts, we have also been introduced to some great healthcare providers. We've had a few presentations in conjunction with our regular meetings, which have been very informative and practical. We had a pediatrician speak to us in the fall, and last week we had a presentation from a pediatric neurologist, Dr. Neil Friedman (who has an interest in neurology and congential heart patients) from the Cleveland Clinic.
As a parent of a child with heart disease, I know that developmental delays are not uncommon. I've always attributed this to surgeries, being on bypass, long hospital stays, etc. I have always thought we were lucky with Sofia because always been developmentally on track despite having three surgeries. When she was an infant we had Help Me Grow follow Sofia, and when at age 2 they told us we didn't need them anymore, I insisted they keep following up with her until she was 3 (which is as long as the program follows these kids). I have always been amazed with how bright Sofia is. She is smart, she understands 2 languages, and she is always amazing us.
After the presentation by Dr. Friedman, the neurologist, I didn't expect to feel less confident about my own beliefs about Sofia's development. The presentation was very interesting, as it detailed the study of pediatric heart patients and neurology. Since surgery began on these babies (not all that long ago), the developmental delays that were noticed (psychomotor delays) were believed to occur because of surgery and the amount of oxygen that was getting to the brain. During the 1980s and 1990s there were studies that focused on different techniques, but it was learned that none of these correlated to a lower indicence of developmental delays.
In the last decade or so, a shift to studying of brains of babies in utero took place. Dr. Friedman showed scans of a full term baby with a heart defect, a full term heart healthy baby, and a premature baby. The conclusion was that one could not tell the difference between the full-term heart baby and the premature baby (essentially they both had white matter injury). It was kind of a blow to learn that the abnormal circulatory patterns for heart babies in utero affects babies before they are even born, so the only way to restore better flow would be to do surgery in utero. Which, if you're like me and Sofia, did not know about her defect ahead of time, and I'm not sure anything could even have been done differently had it been diagnosed prenatally. It boiled down to not really mattering when your child had a particular surgery (like and old Fontan or new one) because the developmental implications were set in utero, not in surgery.
So you can see why I felt somewhat uneasy after this presentation, especially because the develomental delays were more common in children with complex congenital heart conditions (like Sofia's). The types of developmental delays that occur are behavior difficulties (ADHD), visual/spatial dysfunction, fine motor, and language difficulties. She doesn't exhibit any of these delays, but that doesn't mean she will be without any of these problems in her life time. ADHD is generally not diagnosed until kids are school aged (selective attention and inability to change focus, impulsivity, hyperactivity). And ADHD medications often have cardiac implications, which can make these patients harder to treat. Dr. Friedman also termed one condition as the "Fontan personality," which is observed autistic-like traits in patients who have had the Fontan surgery. So, more unsettling.
I am glad I attended, and I ended up making an appointment for Sofia for an assessment with Dr. Friedman. The neurocardiac clinic at the Clinic seems like a good place for that (they also can diagnose genetic conditions, provide PT and OT if needed, nutrition, etc.). I figure that an extra set of expert eyes on Sofia can't hurt. I also now know that you have to be proactive about these things and we will keep an eye out on her as she is in preschool now, but especially when she starts kindergarden. However, I will not obsess about how pokey she is...how long it takes her to put her shoes on, get her coat on, and get ready to leave the house because she is 4 and this does not mean she has ADHD. :)
I'm thankful we have the MLH group and am learning things everyday. The one thing I often take away from these types of presentations is that Sofia and kids like her are on the cutting edge of medicine. There is so much unknown and they are products of refined surgeries. There is much to be learned, but I am so grateful she is here and doing amazingly well.
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