…We will be boarding a plane headed for the U.S. It is hard to believe that the time has actually come for Simeon to have his big skull surgery. It is something that has been on our minds and hearts for about 7 months now, something that was always in the distant future, but now, here we go.
I realized that I never really wrote about how we came to understand his diagnosis or the story of meeting his amazing doctors, and even more then sharing with you this story, I really just wanted to have a written down account of how amazing this whole process has been.
Last June while we were still in the hospital for Simeon’s birth, Nathaniel noticed that his head was shaped a little funny. I was so drugged up on pain meds, I didn’t even notice and wasn’t sure what he was talking about, but when Nathaniel mentioned it to the pediatrician, he suggested we get a CT done just to make sure one of the skull bones weren’t fused together, because if they were, he would eventually need a surgery, and there could be a possibility of a neurological problem. We asked the whole family to pray and when the tests came back negative, we all breathed a sigh of relief and went home to recover and enjoy our new little family.
Because his birth was so scary, and the pediatrician had suggested a neurological defect, we started to worry when Simeon constantly arched his back and slept in an odd position – almost like he was half flipped over with his head and neck extended. Google suggested it could be something like cerebral palsy, something that can happen after a prolapsed cord which is what we had. We brought it up to our pediatrician who was confident that everything was fine, but also suggested we see a neurosurgeon just to be sure.
At 2 months old, while we were still in Bogota, we took him in to see this doctor who was just one of the oddest people we had ever met. His office was crowded and filled with all kinds of random stuff and he looked like a certified hoarder. He spent very little time with us, but when he pulled up Simeon’s scans, he very nonchalantly told us that his skull was fused in the front, and that is why he has that ridge going down the front of his head, which will get worse with time and is very prominent. A condition called craniosynostosis, specifically of the metopic ridge. He said he suggested surgery mostly for aesthetic reasons and that he could probably do the surgery in a few months. We left his office completely convinced that we would never put our baby through a horrible surgery just so he would look a little better. We wrote off the suggestion and were thankful that he didn’t see any signs of a neurological disorder.
Then I remembered my friends from home who had written something on facebook about their son being diagnosed with craniosynostosis too. I wrote to her asking how they had come up with this diagnosis and why they chose surgery. We spent a few hours on the phone and she explained to me that it isn’t just an aesthetic surgery, that it really does harm the brain, and that was why they were led to have this done. It was just what I needed to hear to get us a second opinion.
We were going to be in the U.S. for Nathaniel’s dad’s wedding, and then decided to spend some time in Tacoma with my family too, so I started the search for a good neurosurgeon. As I started making calls, I realized that we needed 3 things in a doctor: 1. they were in our insurance network 2. they didn’t require a doctor’s referral and 3. they had an appointment available for the short window we would be home. My first choice was Seattle Children’s hospital, but they only filled requirement 1., which wasn’t going to work for us. Finally I found one doctor who filled all three requirements and we made our appointment with him.
He was a very kind doctor, but he worked out of an adult hospital and mostly only worked with adults. He recognized that Simeon had this problem and strongly suggested we get it taken care of, mostly for his emotional well being later in life as he would likely be made fun of a lot as a child. He didn’t mention the pressure it put on his brain, but we were pretty much convinced at this point that even just for aesthetic reasons, we wanted our child to have the best life possible and not make him live with a condition that would set him up for a harder life than normal. This doctor had one pediatric plastic surgeon he could team up with for Simeon’s surgery, and told us he could do the surgery as soon as the next week. Simeon was about 4 months old then. We left the office very excited that we had found a surgeon we could trust and that he would be able to do the surgery even while we were home for that visit.
Later that evening the doctor’s office called and told us that this plastic surgeon was no longer accepting patients as he was about to retire, and therefore this doctor who we’d met with couldn’t help us. We were crushed. His secretary said she could try to get us an appointment with Seattle Children’s but it would be tricky. We asked her to try. We only had a few days left in Tacoma on our current tickets, so it was going to take a miracle to get us into a very busy hospital.
Meanwhile, we had all kinds of people praying for us to find a good doctor who could do this surgery. A plastic surgeon family friend personally called the plastic surgeon who was holding up this whole process to ask him to add just one more patient, and he told her that he wasn’t retiring and didn’t know where she had heard that from. We were so confused but took that as our answer that this doctor just wasn’t the one to do the surgery. Another nurse friend gave us a list of the best children’s hospitals in the U.S., and we were pleased to see Seattle Children’s was in the top 12.
Finally we got a call from that secretary from the other doctor’s office who had worked hard and pulled a bunch of strings to get us seen by a doctor at Seattle Children’s that afternoon. It was one of those kinds of appointments where someone had canceled and it happened to be when all of the doctors would be in the office anyways for their weekly meetings, so we might not get full appointment times, but at least we could have a consult and meet the team of doctors. We were thrilled and headed up to Seattle.
Once we got there we were immediately impressed with the facilities, the level of security and just how well everything was run. These people knew what they were doing. When it came time to meet the doctor, we were instantly impressed by his demeanor and vast knowledge of Simeon’s condition. He spent TWO hours with us explaining everything about Simeon’s condition, what that meant for his life and future, what they would do to correct it, and even statistics on how common this is. We felt such a sense of relief that we were in his care, and that he was going to be in charge of Simeon’s case. He explained many things, but some of the most profound moments for us were when he said that obviously this is an aesthetic issue for the child, but from what they know about the brain, being forced into a triangular shape, like Simeon’s head is, is very bad for the brain and puts a lot of pressure on it. That made me wonder if that is why Simeon, even before he could roll over, was always trying to sleep on his tummy because it hurts his head to be on his back – even now he can’t stand to be on his back and instantly rolls over if you set him down. He strongly urged us not to have this operation done in South America – because of the delicate nature of the surgery and the need for a blood transfusion after, and we were convinced right away not to consider going anywhere but Seattle for this surgery. Another thing he told us was that this condition isn’t very common, and Simeon’s particular fusing – the bones in the front of the skull – happens to 1 in 10,000 babies. He shared with us that this condition often accompanies a neurological disorder, but judging by how Simeon was following the conversations and engaged during the whole appointment he assured us that “the lights are on.”
At one point the plastic surgeon, who we had heard wonderful things about from fellow church members walked in and even from across the room diagnosed Simeon with craniosynostosis – saying he had been poked and prodded enough for the day, so he wasn’t going to touch him, but from there he could see that Simeon has this and it needs to be fixed because it puts too much pressure on the brain causing problems later in life. That was even further conformation for us. All of the doctors who we talked to that day emphasized that they will not perform the surgery on a baby younger than 10 months because it is like trying to build a house out of wet noodles as opposed to wood. Performing the surgery too early would cause the soft bones to shift and would require another surgery or more complications later on. Out of the three opinions we had gotten, two of the doctors were willing to perform this surgery at a time which would have been more destructive than helpful and we would be dealing with the poor after effects of it now. Instead, the hospital with an entire cranio facial department, who has this procedure down to a science, told us flat out that these other doctors didn’t know what they were talking about and it’s a good thing we weren’t going with them. It always pays to get another opinion when it comes to your child’s head.
Towards the end of the appointment, the head nurse came in and showed us a few photo albums that some former patient’s parents had put together of post surgery and recovery. She very gently and kindly showed us these photos knowing they were hard to look at, but she was optimistically sharing how quickly these babies heal and even though their eyes are swollen almost shut after the surgery, they still find ways to look out of the little slits left and to connect with their parents and family. It was devastating to see those photos, but also knowing that this is going to be normal and part of recovery is reassuring. It is the part I am dreading the most for sure.
Like I said, this hospital has their system down to a science, which usually includes CTs and pre-op appointments months in advance, but they are happy to work with international patients, so they are allowing us to do all of those things the week of the surgery. When we arrive, we will have a day or so to recover and then are off to a CT scan on May 2nd, where Simeon will be sedated, on the 5th we have all of his pre-op appointments with the entire team of surgeons, and then May 9th is the surgery, and we are told to expect a 5 day hospital stay afterwards, part of the time in the ICU.
As we approach the surgery, we are fearful of course because this is our sweet, wonderful baby who we are about to put through incredible pain and suffering. There is the fear that something could go horribly wrong in surgery, the fear of recovery not being perfect, and the fear that I won’t be strong enough to handle all of this. I also have a strong sense of peace. God clearly led us to this amazing hospital, has provided above and beyond the funds needed to get us to the U.S. and for the actual surgery, and I trust that the decision we have made is the right one. I keep telling myself that I do not want my fear to rob my son of a happy future without brain problems. I know this surgery is not an option, but it feels that way because his condition isn’t life threatening. But, I have faith that the Lord is completely behind this surgery and now I am putting my son in His care to do His will and praying for strength to get us through the really hard parts of waiting for the surgery to be over and recovery.
We are looking forward to 6 weeks post op of recovery and rest in Tacoma and thankful that we are able to do that with my family around. We are happy we will be celebrating Gaba’s 3rd birthday and Simeon’s first in Tacoma.
Please pray with us for this surgery, please thank the Lord with us for how he has provided the perfect hospital, doctors and finances for us. We couldn’t be in better earthly care, but we know that we are truly in our Father’s care during this time.