Metopic Synostosis: How a Mother’s Intuition Changed Everything
As Obstetricians, we deliver a lot of babies. Contrary to what every person who volunteers their labor story has told you, most pregnancies and deliveries are very normal and uneventful. Most people have safe, healthy babies and most moms make it out of this almost 10-year ordeal unscathed.
In speaking with a mom of our practice recently, she captured my attention with an amazing story about how her unrelenting intuition saved her daughter from a permanent deformity and the health challenges associated with it. She has given me permission to share her story. As a disclaimer, I don’t make it a practice to share stories of rare or scary diagnoses because of the anxiety these stories can cause expectant or future mothers. I am making an exception because sometimes a parent with a nagging feeling that something is not right just needs to TRUST THEIR GUT. Ironically, my Gastroenterologist husband always says that.
The following is the story of this brave mother told in her words:
I knew immediately when she was born that something was wrong. Her forehead was so pointy and when viewed from the top, her head resembled an egg. She also had a very “pinched” look to her face and her eyes seemed to angle upward at the outer corners. But my OB, the nurses, pediatricians, and lactation consultants all assured me that there was nothing to worry about – after all, babies come out with funny shaped heads all the time, right?
As someone who suffered from severe postpartum anxiety after the birth of my first baby, and who admittedly is a bit of a hypochondriac, in any event, I decided to trust the professionals and set aside my fears. But when my baby was 3 weeks old, I’d had enough and at 2 AM googled “infant pointy forehead” and within moments knew that she had Metopic Synostosis. The following week, I cried and cried as the specialists explained to my husband and me that our tiny baby would need to have surgery on her skull (in actuality – brain surgery) or her brain would not properly develop.
Our doctors were so kind and patient and through my tears explained that Synostosis (various kinds) is very common, though Metopic Synostosis is one of the least common kinds and is infrequently diagnosed in time for minimally invasive surgery, which must be performed before my baby is 3 months old. The alternative is a more invasive surgery, which babies do not undergo until they are 9-12 months old. Thank God for that nagging feeling of mine, right? I am a canary in a mine.
Handing her to the surgeons on the morning of her surgery was one of the hardest moments of my life and seeing her afterward was heartbreaking. In the end, she handled the procedure like a champion and we were home in two days giving our tiny superhero only Tylenol! I can’t talk about the surgeons and specialists or the young nurses who cared for our baby (and us) without tearing up – they were all amazing beyond words.
After each consultation I would ask the doctor, the anesthesiologist, the nurses, the technicians, to “tell me something that will make me feel better”. I think the best responses I received were: (1) “the kids you see online are not your kid. Stop believing that their problems will be your problems”. (2) “this is a very scary day for you, but remember, for me, it’s just a Tuesday. We do this all the time and her case doesn’t scare me.”
Today, our little girl is ahead of the curve as far as meeting her milestones and is a bright, attentive, super happy, smiley, and very pretty (if I do say so myself) 6 month old. She is wearing a helmet to help reshape her head and we’re seeing great results already.
Re-enter Dr. McDonald:
NOW DO YOU SEE WHY I WANTED TO SHARE THIS STORY! Amazing right? My take home message: Don’t believe everything you read on Google, but trust your gut enough to SPEAK UP if you know something isn’t right. Common things are common, and rare things are rare. Someone else once said, “Second chances are rare so use your first wisely.”