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11 Lessons I Learned About Caring for My Child With Microcephaly

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Two years of caring for Miguel has taught me a lot about microcephaly and myself.

Here are some of the lessons I’ve learned:

1. Microcephaly does not mean the end of the world.

Like many parents who receive news about their child’s medical issues, I felt hopeless. What will happen now to my child? Will he be able to function and be independent? Will he be able to grow up or will his life be shortened by this condition? There were a lot of questions and the only answer we received from his doctors was, “we just have to wait and see.”

Now I know there are many cases of children with microcephaly who grow up and function independently. That certainly gave me hope. I knew then that I have to do my best to help Miguel reach his full potential, whatever that may be. It certainly is not the end of the world for us.

2. Don’t obsess about the size of your child’s head. 

When we found out about Miguel’s microcephaly, I became obsessed about the size of his head. I was compelled to measure his head all the time. But believe me, it doesn’t help. So, put that tape measurer down.

3. Early intervention is important.

I realized if I want Miguel to reach his full potential, I need to access services provided for children like him. It’s great that Miguel’s doctor furnished me with lots of information on who to call and what to do. So, I contacted our Infant Development Program and signed up for physiotherapy. There was also a case worker assigned to us who helps in coordinating therapies for Miguel. There are speech and occupational therapists who visit Miguel at least once a week. I can attest to the benefits of signing up our child as early as possible. For Miguel, it has meant noticeable progress.

4. Learn as much as you can about your child’s medical issues.

Most children with microcephaly have other issues like epilepsy, hypotonia, hypertonia and cerebral palsy. So, it is imperative that we are vigilant as to what symptoms we are seeing in our child. For me, Google has become my best friend. Whenever I see something different with Miguel, I google the symptom and find several resources talking about different medical issues. The information helps me in asking the right questions to his doctors. At first, it was just microcephaly I was researching. Then, it moved on to hypotonia after we were told by his neurologist he has low muscle-tone. When he started having seizures, my research brought me to articles about epilepsy. Learning as much as I can about Miguel’s condition somehow puts my mind at ease because I know I am not groping in the dark about what to expect.

5. Maintain a file of all medical reports.

While doing research on Miguel’s condition, I came across a blog of a mom with a child with a disability. She said from day one, she maintained a file of all her child’s medical reports. That gave me an idea. I took a binder and started compiling all lab results, doctor’s reports and even correspondence with agencies providing services to Miguel. It has helped me be organized and make sure that nothing is missed when it comes to the investigation into Miguel’s condition.

6. Be proactive when dealing with your child’s medical team.

The primary advocate of our child is us — his parents. So, we must act as the thread that holds everything together. I learned very early on that I have to ask many questions. I have to be persistent in getting answers. I don’t wait for them, I push his doctors to give them to me. I know I may have looked annoying to them, but it’s the least I can do for my child who can’t express himself or advocate for himself yet. Wouldn’t  you agree with me?

7. Don’t be afraid to ask for help from friends or relatives.

This is where I’ve been struggling. I am a naturally independent person. I always tend to do things myself even if it means spreading myself thin. As a mother of four, my days are always busy and I realized that if I want to stay efficient, I have to ask for help. So, don’t be shy to ask for help.

8. Avoid comparing your child to others.

This means not even comparing our child with other children who have microcephaly. From what I’ve read and personally experienced, each child is different. Each of them has different medical issues associated with their microcephaly. So, it is useless to compare my child to others.

9. Focus on your child’s own milestones.

It is easy to fall into the trap of expecting our child to do things that other children with disabilities are already doing. For instance, I met a mom with a child the same age as Miguel and with the same medical condition. Her child started walking when he was 1.5 years old, while Miguel is barely crawling at the age of 2. If I let myself be envious of the other child’s development, I will be missing out on enjoying Miguel’s own milestones.

10. Spend time outside the house. 

One thing that can be challenging for some moms like me, is finding time for ourselves. I’ve learned I can get depressed when I don’t consciously schedule time getting out of the house. This is a lesson I learned only recently. So, spend time with your friends, husband or your other children. It can be rejuvenating. Take care of yourself. We are the primary caregivers of our children so if we get sick, who will take care of them? Eat healthy foods and have plenty of exercise. For me, I found an activity as simple as walking can make a big difference.

11. Join a community of moms who are in the same situation.

This is also a lesson I learned just recently. I found several groups on Facebook for moms caring for children with disabilities. The first one I joined was the Microcephaly Support Group. Then there are: Parents of Children with EpilepsyHypotonia Parent Support GroupG Tube BabiesChildren with Speech Delay Support, etc. You may also find groups in your own area which you can join for support. In my experience, I find that connecting with other moms who can understand exactly what I go through makes me feel stronger.

I hope these lessons help you in caring for your precious little one. I’m sure we will have more lessons to learn as we go forward.

Follow this journey at Miguel’s Life With Microcephaly.

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Getty image by julief514

Originally published: December 5, 2017
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