I would say that the first year was the worst with a lot of confusion, shock, anguish and tears.
We were told that Miguel has microcephaly when he was two months old. A doctor in the emergency noticed his small head and referred us to a pediatrician who confirmed that he really has microcephaly. I was sad, shocked and angry at the same time.
I was shocked because I had an uneventful pregnancy with Miguel. I went to my regular ultrasound appointments and nobody saw anything remarkable. I remember asking my OB during my last visit with her before my delivery if she found anything out of the ordinary with my baby. She assured me that there was nothing to worry about. So, I was shocked when right after my delivery, Miguel was rushed to NICU because, apparently, he had a stridor and he was born with low weight.
That first year, Miguel had a lot of tests to determine any genetic syndrome or disease that will explain his microcephaly and low muscle tone. He was even included in the BC Children’s Hospital’s CAUSES project to use clinical genome-wide sequencing in identifying a genetic disorder associated with his symptoms.
But up until now, they haven’t found anything as a final diagnosis.
This year, Miguel has been in and out of the hospital because of his frequent seizures. We were told he has status epilepticus and that he would be in anti-seizure meds for the rest of his life. So far, his seizures have been in control with his new medication.
Having Miguel has taught our whole family a lot of things and for this, we are grateful.