Recently, Patrick and I have been asked to talk to a few different families with newborns facing similar situations as the Little Lion Man. Both of us are happy to share our story, but we also know the reality these families are facing. When our little guy was first born, we were always talking. Talking to doctors, experts, nurses, physical and occupational therapists, updating friends and family members, weighing option between ourselves … calling a stranger on the phone to hear “their story” was the last thing I had energy to do. With so much information, decision-making, and trying to keep all four of us treading water, I was too consumed in living through our story.

That said, there were a few things I know now that I wish I had known then. With that in mind, I’d like to share this open letter to families with newborns diagnosed with Pierre Robin Sequence or a child with upper airway issues facing a tracheostomy, in hopes that you might come across it in your 2 am web surfing… and it gives you a moment of peace.

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Dear Mom and Dad,

Congratulations on your little miracle!

I know things are overwhelming right now; to the point where deciding what to eat for lunch seems too tasking. {Nothing probably tastes that great right now away.} Make yourself a quiet moment, skip the chewing gum entree, and have a cup of soup. You don’t know when you’re going to need to jump the next hurdle. That’s the thing about NICU life.  It’s not for the faint of heart; you’ll need to dig down and find that superhero strength that you’ve only previously read about. You’ll find it. After all, it’s your child who needs you to find it most.

These first months are the hardest. In retrospect, it seems easy to say that. I know you’re exhausted. I wish I could tell you that’s going to change, but it’s not. Not at least for a while. You’re going to be more tired that you thought humanly possible. It’s a different type of tired than most parents of newborns face — despite what your friends with colicky babies may think or try to convey. It’s tired fraught with adrenaline, apprehension, monitor alarms, midnight hospital drives, and hot tears in a lukewarm shower.

There’s an upside to the worried exhaustion. Your happy moments will be all the more joyful because of it. I promise you there will be happy moments. The first time your child grasps your finger. Rocking a sleeping baby in the middle of the night (or maybe it’s 2 PM; the NICU room is always dark — you lose track of time) when your favorite song comes on Pandora. First real hugs. Nine months from now — when your growing baby grabs a pair of boxer shorts while you’re folding laundry and plays peek-a-boo — only to get tangled up in them and a gaggle of laughs.

You see, this time is just a blip on the radar. The first chapter in the story of your child’s life.

An Open Letter to Parents of Newborns Diagnosted with Pierre Robin - (cool) progeny

I don’t know if you went to medical school or have had any experience in a medical-related field, but you’re about to get an immersion language course. You’ll fall into the jargon; it’s like moving to remote location in another country where no one speaks English. Your friends and family members won’t know what you’re saying; try and find a way to translate for them. They want to be there for you and your child.

Many of our friends and family members heard ‘cleft palate’ when we described our son’s Pierre Robin diagnosis and didn’t realize the severity of the situation. They were thinking Smile Train commercial or thought it was a simple cosmetic issue. We got several emails and phone calls offering encouragement — stories of how they knew so-and-so and they had a cleft repair and you couldn’t ever see the scar! I’m sure you’re getting those, too. They mean well. They truly do. Resist the urge to drown your iPhone in the ladies’ room sink. You’ll want it to capture that cutie’s first grin. You won’t even notice the pulse ox when it happens.

There are times when you’ll question whether or not you could have prevented this situation. Especially when the geneticist’s assistant starts asking probing questions about your pregnancy to complete the “official” birth defect form. “Oh, you didn’t take a folic acid supplement for at least six weeks prior to conception? You may want to do that next time.”  This is not your fault. This is NOT your fault.

After our Little Lion Man was born (you’ll find the appropriate nickname for your child), we were immediately faced with huge decisions when it came to treating his medical needs: a mandibular distraction, a tongue-lip adhesion, or a tracheostomy. Huge decisions for a genetic condition we didn’t even know existed the day before he was born. My husband and I felt like we had to choose between the lesser of three evils. How could anyone do what we were being asked to their own child? Different Children’s Hospitals had different schools of thought. Opinions differed among doctors at our own hospital. Do your research. Trust your gut. Trust your doctor.

Trusting your doctor is mission critical. I say this because you have probably had a few that left you puzzled (either in a ‘how do they manage to tie their shoes every morning?’ or ‘who the hell is this asshole?’ kind of way). In a hospital environment, you’re assigned a doctor based on who’s on service when a need for a specialist arises. New faces are popping in and out of the room all the time — especially in a teaching hospital. If the person who pops in shakes your hand like a codfish, makes you feel inadequate, spends less than 30 seconds looking at your child, or does the ridiculous “put a hand on your shoulder to connect with you” dance that some ‘expert’ taught them in a patient relations class — complete with a trite ‘keep up the good work, mom” — find another. Sending your child into surgery is hard enough without doubting the person wielding the scalpel. Your doctor needs to respect you, too. Open dialogue and honest-to-goodness listening is key to coming to the best care decisions for your child. Ask all of your questions — even the tough ones. You do have a choice. You are your child’s best advocate.

An Open Letter to Parents of Newborns Diagnosted with Pierre Robin - (cool) progeny

Our plan was a mandibular distraction. All of the doctors on our medical team decided that LLM was a good candidate for it for a variety of reasons, even at three weeks old. When my husband and I evaluated the data and weighed the options, we agreed with them. Your doctors may have a different recommendation for your child; you’ll find on the message boards or Facebook groups that everyone has an opinion about the ‘right’ treatment. Parents are fierce and protective when it comes to their kids — and may not have the best tact in these online spaces. I’ll say it again. Trust yourself and your doctors. Ultimately, LLM ended up with a distraction and a trach due to a complication during surgery.

Don’t triple guess yourself. You make the best decision at the time given the information you have.

We weren’t prepared for a trach. It was our intention to avoid it. The prospect seemed too scary. People warned us that a trach came with round-the-clock nursing care. Feeding aversions. We wouldn’t be able to hear our child’s voice. Delayed speech. Delayed milestones. Some of our nurses got teary-eyed when they heard LLM was coming back from the operating room with it.

Know what else a trach came with? Breathing. Easy breathing. Watching my child breath, in and out, and truly rest for the first time was one of the happiest moments in my life. {See? I told you there will be happy moments. They’ll happen when you least expect it. When you need them most.} Truthfully, it was less visually jarring than the jaw distraction hardware. Both saved his life.

Yes, we’ve had to make lifestyle adjustments because of the trach.  Especially post-NICU. You’ll come to those. They aren’t things you can worry about now. You will do what you have to do when you get there.  Life is hour to hour right now. One day, you’ll live six hours at a time. Then twelve hours. Then one day at a time.

And that will be another happy moment.

Sending much love your way,

Heather