Tuesday, April 24, 2018

When you obsess about your child's diagnosis: group therapy

"My baby had an intracranial bleed at some point when I was pregnant, and the brain damage was very large in the MRI image the geneticist showed to us," writes one mom. "At five months old he has an intermittent lazy eye, some difficulty focusing his gaze, and head  wobbling when held upright and trying to focus, but has otherwise met milestones so far. We are trying all sorts of therapies with him. There is one thing I keep obsessing about. At birth, his head percentile was in the 10th to 15th range, and it has now fallen to the 1st percentile. I can't even say the micro...y word. Our doctor suggested removing all labels from his file. Positive thinking is one thing, but facts are another. I am going to be returning to work soon, and need to find a way to stop obsessing over head size and constantly googling about children with micro...y. Help."

I knew how this mom felt, as I also used to obsess over Max's head size when he was a baby. In one of my more anxious moments, I asked the neurologist whether Max might resemble that shrunken-head guy at the end of Beetlejuice, in the Netherworld Waiting Room. I vividly recall laughing through my tears after I said it, and he laughed with me, because we both knew it was crazy talk.

Discussing my anxieties about microcephaly with the doctor and the therapist I saw weekly helped. From the get-go, Max's neuro told us to pay attention to the child in front of my eyes, not the MRI film. While it took time for me to heed his advice because I felt compelled to keep searching for an answer that didn't exist—what a small head size could mean for Max's cognition and future—I finally forced myself to stop looking it up. The only time I thought about it was when Max got measured at pediatrician checkups, and while I still worried ultimately I accepted that Max's head was growing on its own curve. This has pretty much been the story of Max's development: He has proceeded on his own timeline, and in his own way.

Please, share your experiences and insights with this mom.


  1. Some thoughts - removing labels isn't going to change the situation. If they are removed and you change and/or acquire doctors then how will they know what previous doctors have learned?

    Instead of using doctor Google, try to find someone (professional or experienced parent) that you can talk with. Someone who won't judge. Someone who can help you turn you obsession into an action plan. Someone who can celebrate with you. Someone who understands the slowness of the journey.

    I know it sounds like this person can't possibly exist. But there is some experienced momma out there who has recently been in your shoes. Talk with your doctor/specialists to see if they know of someone.

    Look for Facebook groups. These will probably be private because you don't want the whole world knowing. I'm in a small group of autism moms/dads. We are all ages and stages. But we are there for each other.

    If you have the time/money/insurance finding a professional to talk with can be beneficial.

  2. "I asked the neurologist whether Max might resemble that shrunken-head guy at the end of Beetlejuice..." I giggled when I read this because when my son was an infant, I shared this same fear with my pediatrician. At the time, it was a legitimate fear for us, so I completely understand this Mom's obsession.

    My son has cerebral palsy, which resulted from three massive strokes at birth (over 50% brain damage). He was born with a smaller head and its circumference dropped to below the 1% curve by the time he was 6 months. In his first year, I measured his head daily, losing sleep over what the slow growth could mean and what he would look like as he grew up. He's now 3.5 and he still has a small head (he and his 14 month old sister wear the same size hat), but it is growing on its own curve and I'm ok with that. He does not look like the shrunken-head guy from Beetlejuice! In fact, he's quite cute. :)

    There are a few things that helped me. The biggest was joining support groups for CP and pediatric stroke on Facebook and speaking with other Moms who struggle(d) with similar fears. The second was my son's neurologist saying to me, "Look, your son had significant brain damage, so his brain will be smaller than a typical child his age. That means his head will be smaller, too. That's all it means. Nothing more!" And the third was simply time and acceptance. The first year of my son's life has been the hardest for us so far, but with time, we've accepted that things will be different for him - and that's ok.

  3. My son had a hematoma causing significant brain damage around the time he was born. We too followed his head measuments like hawks until, well, we didn’t. It was causing so much anxiety that his doctors stopped measuring every single visit. There were just so many visits. How many times did I have to see his tiny head scrutinized? My saving grace was people. An amazing social worker who basically taught me to parent my little guy as well as stay a person and become a parenting team. If you can find a support person, do so. There is no need to reinvent the wheel, they leaned to do the heavy lifting so that we could learn from them. I also found moms. Moms of kids who have cerebral palsy, but also lots of moms who came out of the same NICU as Ben. There is something in the experience that deeply connected us beyond our children’s diagnoses. Look for your people, they are out there looking for you. My boy with a tiny head is 15, 5’9” with a pretty average looking head, in high school with his peers and off at horseback riding right now. I wouldn’t be the same mom without the support of others.


Thanks for sharing!

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