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What Happens When There Aren’t Ten Fingers and Toes?

When you’re pregnant, you’re bombarded with threats of this and that that will cause your unborn child to develop three heads. It seemed every time I turned around when I was pregnant with H, someone told me something new that could cause premature delivery, autism, birth defects, miscarriage, etc. But what happens when, despite your careful choices during pregnancy, something goes wrong? Your baby is put in your arms and there is a problem. WHAT? SERIOUSLY?

I have spent more time at Children’s Hospital than I would like. Every time I leave Children’s, I am reminded that my problems are minor; we are blessed. At the same time, there are problems, and we are working through them and have worked through them. Here is my story.

After a horrendous labor and delivery (I’ll share that story another time), my beautiful baby was placed in my arms. At first glance I thought, “Something is wrong. His chin is small; something is wrong.” I was ashamed for having that thought. Wasn’t I supposed to be admiring his beauty instead of critiquing? Don’t get me wrong. I was instantly in love and found him to be so, so beautiful. But there was a problem.

I was doped up on post C-section drugs when the lactation nurse doing her rounds heard a clicking noise while H was breastfeeding. She looked in his mouth and saw he had a soft palate cleft. Come again? What was wrong with my baby? This basically meant he was born without the punching bag in the back of his throat. Our room was soon bombarded by a constant stream of specialists, ranging from lactation specialists to pediatricians to speech pathologists. I had no clue what was going on. After a few days we were discharged. I was still so focused on the chin and something else—his breathing. I would lay awake at night listening to his wheezy, labored breathing, staring at the small chin. Something wasn’t right.

I received a call from Children’s saying I needed to come meet with a specialist in the craniofacial department to have his cleft checked out. The nurse on the phone asked me if there was anything else I had noticed to be wrong with him. Yes, I said, embarrassed to repeat my obsession with the chin and breathing. I did it anyway. She paused and said I needed to come in right away, today. She said H sounded like he might have something called Pierre Robin Sequence. This is when the lower jaw doesn’t fully develop in the womb, pulls the tongue back, and restricts breathing. I immediately hopped online and googled. I really didn’t like what I was reading. My pain med-addled, sleep-deprived self wasn’t in any condition to be hearing what Google had to say.

Once we arrived at Children’s, the doctors tried to explain that, at this point, there was no way to know exactly what this journey was going to be like for H. It was a waiting game to determine if he would need to have jaw surgery, surgery to close the cleft, major orthodontic procedures, hearing aids, or help with speech. Many with Pierre Robin Sequence have a tough time gaining weight, and some develop psychological problems because of other kids teasing them for their speech problems. The big one was that he couldn’t be on his back—not ever; he could die.

Okay, so every class I went to before giving birth pounded the dangers of tummy sleeping into my brain. But now I was told he could die just sitting in his car seat, so someone needed to be in the backseat making sure he didn’t turn blue. Sure, no problem. Seriously? How on earth was I supposed to do that? I live forty-five minutes away from family and friends. Once I got past my initial “poor me, poor H” pity party, I started seeing the miracles. I was told my doctors had never heard of a baby with a soft palate cleft who could breastfeed. H could. The doctors were totally baffled. This was a miracle, a blessing. The hospital gave us a special car seat that was really a bed. He had to lie on his tummy in it. It made me very nervous. The first and only time I tried using it, his face smashed up against the side. Hello, SIDS! I was convinced his normal car seat was fine for him. We took him in for an oxygen test to see if his breathing was good enough for a car seat. The doctors were shocked when he passed with flying colors. Miracle number two! We were able to take him on a road trip. Didn’t think that was going to happen for a long, long time.

Then the sleep issue—ay ay ay. Children’s said only tummy sleeping; his pediatrician said whatever you do, no tummy sleeping. We settled on side sleeping. I found a positioner that would keep him on his side. I did a little research though and found that they were banned in Canada and that kids had died using them because they could shimmy down and suffocate against the side of the positioner. Great. No tummy, back, or side. We used the side sleeper and hoped for the best. One night, as H was sleeping with his side sleeper, I woke up and peeked at him. Sure enough, he had shimmied down and his face was pressed up against the positioner. That thing was tossed in the garbage right quick. Mini-miracle: no SIDS. I’m not sure how we made it through that first year, but somehow we did. On top of all this, H had serious colic issues. I’ll save that story for another time as well.

It came time for H to meet with a surgeon to repair the cleft. I was a nervous mess. H just seemed too young to be operated on. Obviously this is a thought every mom must have, no matter her child’s age. We met with the surgeon’s assistant who said we absolutely needed the surgery. Darn. Then we met with the surgeon. He said he would not operate on him. H was able to say consonants he shouldn’t be able to say. Another miracle, I thought. As time has gone on, though, I have watched H sneeze a strawberry out his nose, and every time he uses a straw, his drink streams out his nose. His speech is also very nasal. We’ve decided that we need to repair this. We now have a surgery date on the calendar for next month. I’m terrified. I have seen way too many Grey’s Anatomy episodes where someone goes in for something “routine” and dies. I do know he will be fine. I’m just anxious for this all to be over. What I want to emphasize through all this is, moms, trust your gut. No matter how crazy people think you are. Well, unless of course you are in fact crazy. I also want to emphasize that you will be okay; this too shall pass. God will never give you more than you can handle.

One last thing: Children’s Hospital in Seattle is amazing. They took such great care of us. I can’t tell you how many times I called the craniofacial on-call doc. I even had one say I could swing by his house on a Sunday. We have been in good hands since day one. I just feel so blessed that we live in Seattle where we could receive this great care. I would love to hear your story if you have one. I truly believe that by sharing your story, you could be a huge help to someone who is going through a difficult time.

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  1. Michal says:

    Wow, Paige. I had no idea all that was going on for you guys. Praise God for all those miracles and thanks for sharing your story. 🙂

  2. Karin says:

    Thanks for your story, we know Children’s Seattle well! My daughter is 12 now, she was born with multiple issues; she’s blind, non-verbal and non-ambulatory. But more than that, she’s funny, beautiful and a huge blessing. Having a kid with such challenges is not an easy road, but this I can tell you for sure, God has been with me the whole time.

    Karin

  3. Kimberly Hoffpauir says:

    Paige-

    He’s gorgeous! What a great mom and dad and older brother to help him and love on him for his emotional development. Give that baby a load of kisses, hugs, touches and kind voices. Take care.

    Keep us updated, please.

    Kimberly

  4. Caroline Robison says:

    Thank you for sharing your story. I will keep H and your family in my prayers for successful surgery.

    I am a huge fan of Children’s as well, I drive out there from Issaquah if we have an after hours issue. Their conscious sedation is a blessing with little ones.

    Peace be with you, Paige.

    Caroline

  5. Marnie says:

    Paige –
    He is such a beautiful boy – I had no idea you were struggling with this. Thank goodness you have your faith and strong and supportive family and friends. I’ll be praying for you!

  6. Ally says:

    Paige, Hayden is so blessed to have you for his mother. Your positive outlook and humility is inspiring. So glad that Hayden is OK and thank God for the amazing healthcare we have in this country!!

  7. Erika says:

    Paige,

    Thank you so much for sharing your story. I have a daughter with Pier Robyn Syndrome. She is 10 years old now, and is doing great, except a small hole in the soft pallet. Which we will get a repair date on in December. I read your story and relived my first day as a mother. She was born around 8:52am, the nurse told us to nurse her before noon. My husband kept saying that she has a very small chin. I said, she is a new born, it should be like that. Later that morning the nurse came by and asked if we had nursed her yet, to which I replied, No, she is not latching on. The nurse checked her mouth and found the cleft pallet. She was transferred to a hospital with a NICU, and two days later to CHOP. It has been an amazing journey with our daughter, however it was a hard one. Keep up your chin, things do get better. They are strong little fighters.

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