Carpentry

 

We are so grateful so many of you care about Meghan, and our family. The love and support have absolutely held us up over the past weeks as we prepared to leave, and especially the last few days as we draw nearer to surgery. For those of you wondering exactly what is happening, I thought it would be helpful to explain in longer detail than what's easy to accomplish with a Facebook post. 

  When Meghan was born, she had surgery shortly after to place her shunt. Afterwards they took routine xrays to confirm the shunt settings and unexpectedly discovered that many of Meghan’s bones had not formed correctly. Many of her ribs are either widely spaced, or fused, and several of the bones of her spine either formed only on one side (hemivertebrae) or are fused together. 

We noticed that she kept her head tilted to the left, and the doctors commented that her face was slightly asymmetric. Chalking it up to torticollis, a common muscle condition in babies, they arranged for PT. When she was just a couple months old we started noticing that sometimes when Meg would move her neck, she would get this look on her face and begin to cry- we knew she was in pain. I asked for orthopedic team to re-look at the MRI she had of her brain when she was born and they were able to see that the bones in her neck did not form correctly either. 

This eventually led to the diagnosis of congenital scoliosis, Klippel-Feil Syndrome and hemifacial microsomia. Through our travel to Duke and meeting with the Undiagnosed Diseases Network, we learned that it is not likely genetic, but rather something happened very early during development that caused this constellation of abnormal bones, and organs.

Over the years we have seen many different doctors. Each of whom had shared that surgery on her spine was a matter of when, not if. She has had countless x rays, CT’s and MRI’s monitoring the growth and development of the bones. 

Her most significant abnormality is in the area of her neck. As she has grown, a curve in her mid back has developed which the surgeon thinks is her body compensating for the curve in her neck. On an x ray it looks like an “S” shape- two wrongs essentially making a right which is why she is able to stand mostly straight. Recently the curves in her neck and upper back have progressed and early this year we learned that the “when” of surgery is now. As she begins adolescence and the period of rapid bone growth the risk is that the curves will progress rapidly and cause pain and permanent disability. The curve in her neck was measured at 79 degrees. We count it a miracle that she has not been in significant pain. Our surgeon said he is amazed that she is able to stand as straight as she is. 

We have been told that Meghan’s case is particularly complicated as there are many levels of fusion (bones that are not separated) and several hemivertebrae. As surgical correction involves the cervical spine the surgery is highly specialized, requires very specific skill, and comes with significant risk. For this reason we have been referred to different doctors out of state. There are only a handful in the US that have the expertise needed to address her condition and do these types of surgeries regularly. 

Our neurosurgeon at Cleveland Clinic thankfully helped us navigate getting these opinions. She did warn us that because it is highly specialized, each surgeon would have a different approach and ultimately, it would be up to us to choose which approach we felt most comfortable with. An understandable statement, but imagine the pressure we feel as parents to “choose”! There is no step by step manual for this surgery- it is where the “art” of medicine enters in to meet the science. So we traveled. We listened. We prayed. That’s how we ended up in New York City, and in the skilled hands of Dr. Lawrence Lenke. 

We met with Dr. Lenke back in June. He said he was amazed that she hadn’t been operated on yet and he was grateful that he would be the one to develop the plan from the start instead of doing a corrective surgery (me too!). His extensive experience and thoughtful approach put Joe and I at ease and even though thinking through the plan with my medical hat on is enough to bring me to my knees, we feel confident that we are in the right place. 

Tomorrow Meghan will have a surgery to place a halo, which is a device that will be secured to her skull with pins. Saturday morning she will begin traction which involves adding 3 lbs a day to a weight system to help gently stretch the spine so that it doesn’t have to be “stretched” during surgery. She will be in traction for 23/24 hours for the next two weeks before the “big” surgery on the 22nd. 

The plan for the 22nd is still being developed and depends on her response to traction. We know it will involve the entire spine, but exactly what happens will be decided closer to the time of surgery. It could involve implants, rods, or other devices. Some of her spine will not be able to be stretched due to the fusions, so he explained that he will need to do some “carpentry”. This is a gentle way of saying he will be separating some of the fused bone. How much carpentry, he isn’t sure of yet. He said he has a 3D model of her spine that he will hold in his hands, study, and decide on the best approach as he sees how much of the curves are able to be corrected with traction. He will take that model with him into surgery, laying it on the table next to her to guide him. 

This is the part that I have to stop myself from thinking through or I can barely breathe. How I will be able to hand her over that day I am not sure. 

We were able to take a tour of the hospital with the Child Life specialist on Tuesday before we met with Dr.Lenke. At the end of the tour we sat down so she could explain the halo surgery to her (I didn’t want to prep her for this ahead of time on purpose. Sometimes I just want to be mom, and be support, not the bearer of scary news). Meghan took it all in stride, declaring herself “Brave enough to do that”. Maybe it was the gems they promised to decorate her halo with, or the fact that she will have her own Wii to play while she endures the traction. Either way- my heart. 

I lay awake the other night after that conversation with the surgeon, thinking through the plan, the surgeons words being tossed over and over in my mind like rocks in a washing machine, carpentry rattling the loudest. Medically speaking, carpentry is well, a little barbaric. But what was intended as a gentle explanation the Lord used to remind me that He is the master carpenter. She will be in His capable hands. He led us here and will be faithful to carry her through this. 

The day we found out Meghan would be born with hydrocephalus, Joe and I claimed Psalm 139 for her. As we read it, the words brought so much comfort knowing that she was created exactly as He intended. 

For you created my inmost being,  you knit me together in my mother’s womb. 

I praise you because I am fearfully and wonderfully made, your works are wonderful,  I know that full well…..

Little did we know how relevant that entire Psalm would become. The very next sentence of the Psalm:

My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. 

Her frame. 

He knows every bone, every surface, every curve. He holds them all together in His hands. None of this is a surprise to her creator, and He can use all of it for His glory. 

So it’s with that knowledge and peace that I washed and braided the hair that will have to be shaved tomorrow, and kissed the forehead that will have a few more scars on it when all is said and done. We will enter the hospital tomorrow for a marathon stay, declaring ourselves “brave enough to do this” and equally grateful that we are able to.

Love to you all,

Sarah