Friday, July 19, 2024

\’My Son Has Microcephaly\’: One Mom\’s Story

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ashley and blake

Mention the word "microcephaly" nowadays, and people immediately think of babies with smaller-than-normal heads and daily headlines about its possible connection to the Zika virus. But in reality, spotting the rare birth defect isn't always so simple. I should know: My 6-year-old son, Blake, was diagnosed with it when he was 1½ years old.

Our Journey to Diagnosis

Our journey began with a well baby visit. At 18 months, Blake still wasn't able to sit upright on his own or walk, and he wasn't talking much either. All red flags, of course, but I didn't think it was anything serious. He had spent much of his young life in and out of hospitals—at 5 months old, he had surgery to correct a malrotation of the intestines and he was also admitted for days at a time while battling a string of illnesses and the flu. So a little delay didn't seem like a big deal to me.

Still, the pediatrician was concerned and referred us to a neurologist, who ordered an MRI. We were given a copy of the test results as we were leaving the second visit, and it was then that I read the diagnosis: microcephaly. (Worse, the results showed that the neurologist reached that conclusion after our first visit, two months prior.)

I was blindsided. It was like my world just stopped. We were already going through so much with Blake, and now this.

I had never heard of microcephaly and was unaware that our baby's head was even considered small (or that a small head size would be a problem, for that matter). During my pregnancy, his head was in the "normal" range and remained there until he was 10 months old, when it dipped down to 1.9 percentile on the growth chart. Looking back, I realize my son should have been diagnosed then, but for some reason he wasn't.

Once we had the diagnosis, I immediately threw myself into learning everything I could about it. This rare birth defect affects brain development and causes a smaller-than-normal head size, and is usually detected by measuring the baby's head toward the end of pregnancy or at the time of birth. A diagnosis is made when a baby's head circumference measures less than the third percentile on standard growth charts.

Common causes include exposure to alcohol, drugs, or toxic chemicals in utero; severe malnutrition; decreased oxygen to the fetus during pregnancy; and infections of the fetus, including chicken pox, German measles (rubella), and toxoplasmosis. In Blake's case, doctors believe chromosomal abnormalities, another potential cause, are to blame. But we need genetic testing to confirm. My fiancé and I have been pushing for it ever since the diagnosis, but our insurance has rejected the test, saying it wouldn't pay for a "fishing expedition." If we pay out of pocket, the test will run a cost-prohibitive $5,000. Still, we're considering pulling the money together so we can finally figure out if that's why Blake has it and find out if it's a risk our future children would face. (We have four children now and would like one more.) At this point, we're willing to do just about anything.

In the meantime, we're trying to follow our pediatrician's advice and wait and see what the future holds for our son. We don't yet know how Blake's brain is affected or what impact that will have on his life, as every child who has the birth defect is different.

We also have no idea whether he'll improve or worsen over time. It's possible—but highly unlikely—that Blake could catch up with his peers, but he could also remain behind. It seems like a lot of guesswork on the doctor's end.

Our pediatrician has also reminded us that there will be times when Blake can't do what other kids can and that we need to learn to be OK with that. Sometimes that's easier said than done. Blake is about three years behind developmentally, which means he still needs plenty of help and support every day. He struggles with mundane tasks like dressing himself and needs constant reminders not to put things in his mouth.

I have to constantly remind myself that the way I parent my other children isn't always right for Blake. Discipline is a particular challenge. It's hard to give him a time-out when he doesn't understand that what he did was wrong. Consequently, my other children see Blake not getting into trouble and don't fully understand why. We also can't give him the same level of responsibilities or chores as his siblings because he can't follow through on tasks, and it feels like we'd be setting him up for failure.

A common misconception is that children who have microcephaly will never lead a normal life. Treatment options are limited, but early intervention could help. I'm currently searching for more experienced doctors in nearby states who can help our family and address our concerns. When you're raising a child with this condition, you need to be surrounded by other people who understand what you're going through and want to help you.

I've been fortunate to discover the Foundation for Children with Microcephaly Facebook group. Everyone there is going through the exact same thing I am, and I get all of my support from the other parents. I rely on the community for a lot—venting when we have behavioral issues, or asking for advice about doctors or schools. Honestly, I don't think there's a better resource than other parents who are going through the same thing.

Though parenting Blake isn't always easy, there are plenty of bright spots. I wish someone would have told me just how big of a blessing it can be. Yes, there will be bad days when you feel knocked down, but those days don't last forever. There are so many good days, like when Blake accomplishes something doctors said he couldn't (like riding a bike, or writing) or learns something at school and feels so proud about it. And those days always outweigh the bad.

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