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 when she was born that something was wrong. Her forehead was so pointy and when viewed from the top, her head resembled an egg (very narrow on one side and wide on the other). She also seemed to have a very “pinched” look on her face and her eyes seemed to angle upward at the outer corners. But my OB, the nurses, and pediatricians all assured me that there was nothing to worry about – after all, babies come out with funny shaped heads all the time, right?
But this was something different. To me something was very clearly wrong with the bones in her face and head. My daughter was a bit slow to regain her birth weight (we struggled a little bit with breastfeeding early on because she was a super sleepy baby) so we were at the pediatrician’s office often, and saw 3 different doctors. We also saw at least 2 lactation consultants in addition to several nurses and other staff. I asked everyone about her head and everyone, again, told me not to worry: either this is just what she looks like or things will round out in a couple of months. 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 these professionals and set aside my fears.
When my daughter was around 3 weeks old, I’d had enough and at 3 a.m. I googled “infant pointy forehead” and within moments knew that she had Metopic Synostosis. I asked my pediatrician the next day for a referral to a specialist. He was kind as I cried in his office and told him what I feared was going on, and sent me straight away to Pediatric Plastic Surgery though he assured me that synostosis doesn’t usually present without other serious development issues (e.g. failure to thrive). I would come to find out that this is absolutely not true!
Plastics confirmed my suspicions on site within seconds of walking into the room. I cried and cried as the doctor explained to my husband and I that she would need major reconstructive surgery on her skull (in actuality – brain surgery) and other bones in her face or her brain would not properly develop but that we would have to wait for surgery until she was 9-12 months old. The surgery would be a serious one and involve cutting open her head from ear to ear, removing part of her skull to reconstruct it, and then pinning it back in. Until then, she would become more deformed and oh, by the way, even when corrected, synostosis may be cause developmental problems like ADD.
I left the office in a very, very, very, dark place. I was physically just starting down the road to recovery after childbirth, wasn’t sleeping, and had barely connected with this tiny new human who was still too young to interact with me. I spent the next 24 hours googling everything I could find about her condition, trying to stick to reputable sources. What I found was devastating: linked to ADD, ADHD, causes hypotelorism, surgical risks, and let me tell you the before and after photos did NOT make me feel any better. All of these children still looked….wrong to me… off…unattractive. Judge me not.
The next day we received a call from the plastic surgeon who had reached out to neurosurgery to discuss my daughter’s case. During this life-changing call we were informed that she could probably have a much less invasive surgery NOW and the neurosurgeons at Northwestern had performed this exact procedure on other babies her age. We met with neurosurgery and the head of the plastics department the following week. A team of people (including Dr. Tord Alden from pediatric neurosurgery and Dr. Gosain from pediatric plastic surgery) sat in a room with us and answered our questions for more than an hour.
New information: synostosis (various kinds) is very common, but metopic synostosis is one of the least common kinds and it is even less common to see it in girls and even less commonly caught in time for minimally invasive surgery, which must be performed before the baby is 3 months old. We were also told that the information online, even from reputable sources, is VERY speculative. In fact, the doctors that I was speaking with had recently published their own study on synostosis and its possible link to future problems, but admitted there was little research to support those theories. It’s more of a logical conclusion because finding a control group (kids who wouldn’t have developed ADD but for synostosis) isn’t possible. I left the office feeling lifted but nervous about the upcoming surgery.
First there would be a CT scan of her head – let’s talk about how difficult that decision was. 4 weeks old getting 3 YEARS worth of radiation at once? No one could tell me what the risks were, and again, google gave me very scary “facts”. Then let’s talk about putting a 6 week old under anesthesia – again… associated risks included ADD, etc. and google was, you guessed it, an asshole about it. Handing her to the surgeons that day was one of the hardest moments of my life and seeing her after surgery was heartbreaking. In the end, she handled the surgery like a champion and we were home in a couple of days giving our tiny superhero only Tylenol! I can’t speak about the surgeons and specialists or the young nurses who cared for Lyanna (and us) afterwards 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 results will be your results”. (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, Lyanna is ahead of the curve as far as meeting her milestones and baby milestones and is a bright, attentive, super happy, smiley, and very pretty (if I do say so myself) 4 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.”