This week we headed to an appointment at Vanderbilt with Malachi’s orthopedic surgeon. Warning: there is a long medical update ahead…I hope it doesn’t bore you too much!
If you are new to the blog here is a little background information:
#1) Malachi was born with bilateral (meaning both feet) vertical talus (opposite of club feet where the feet are rotated outwards and up). We had to put him in leg casts every week for 5 months and do a surgery on both feet. He wears leg braces called AFOs 23 hours a day to keep his feet in the proper position.
#2) Malachi was also born with bilateral (meaning both) hip dysplasia. In the NICU he would rest his feet over his shoulder. It looked terribly painful but he didn’t seem to mind! His hips started to find their way back into the socket but are now both completely out and up above the hip joint.
#3) Malachi has cerebral palsy, and his legs are very affected. His brain is telling his leg muscles to pull tighter which is why his hips are so severely out of place. One of the main muscles that is affected runs from his knee to his hip joint and is so tight it does not allow his knees to bend very easily. We call these tight muscles “spastic” and they can continue to worsen over time.
Hopefully that background information will help this update make sense!
Malachi’s case is so complicated that the Chattanooga doctor we were seeing recommended we switch to Vanderbilt. We have found a wonderful doctor there and have been meeting with him every few months to discuss a game plan. At our last appointment with him in November we had decided to start thinking through a femoral osteotomy. I don’t recommend googling the term unless you are in the mood to cringe. The procedure is extremely painful and extensive, and must be done by the age of 7. The surgery would involve an 8 inch incision where they surgically put the ball of the femur back into the hip socket and secure it with metal plates. Malachi would be in almost full body casts (nipples to toes) for a few months. And the catch…the procedure is only 60% successful, meaning there is a 40% chance that they would pop right back out of socket. But we are told that without this surgery, Malachi would never be able to walk.
Jake and I have been very unsettled about this surgery and had planned to push it off for several more years. We hated the idea of causing Malachi so much pain, and with such a high chance for it to be unsuccessful. But we also didn’t want to not do something that could help our warrior walk.
This week we met again with the surgeon and had a brutally honest discussion about Malachi’s future. The surgeon acknowledged that since he has been seeing Malachi, there has been no progress in his leg function. Let me explain that a little…Malachi’s brain does not communicate with his legs in a functional manner. So as the doctor stated, even if we put all the parts where they should be, his brain is not telling his legs to move. Malachi is unable to move his ankles at all. And he can only extend his knee and is unable to bend it without help.
As much as I hate to, I 100% agree with the surgeon that Malachi’s brain is his legs worst enemy. After much deliberation, Jake and I have decided to not pursue the femoral osteotomy and instead go a different route.
We will be doing nothing. Yup- you read that right. At this point, we will simply watch and wait. Statistics show that 50% of children with hip dysplasia will go on to develop severe pain during the time of a big growth spurt, particularly around the age of 9. If Malachi is in that 50% group, as soon as we are able to recognize that his hips are hurting we will do a surgery to remove the source of the pain (the head of the femur). It will be sawed off and the surgeon will try to fill the empty socket with scar tissue. The surgery is way less painful than it sounds and astronomically less painful than the first surgery option. It has a very high success rate for alleviating pain and will never need to be repeated.
The only big downside is that we are having to come to terms with the realization that Malachi will never take unassisted, purposeful steps. Once the head of the femur is removed he will not be allowed to put weight on his legs at all and will absolutely be confined to his wheelchair. Until then, we are told to do whatever makes him happy, as we cannot do any more damage than what has already been done.
Although this news can seem devastating, I left the appointment feeling such a peace. Jake was not able to come with me, so I called him and summarized, and he also had a comforting peace about our new plan. We always want to do what is best for our Malachi, even when the choices we have to make for him don’t match up with our hopes and dreams. We are learning to let go of our expectations and simply enjoy the child we have been given. That is a very hard thing to do.
When I ponder the decision we have made, I find myself wondering why it is so important that Malachi walks? I look at this handsome, happy toddler and realize that he is content with his life…so shouldn’t we too be content?
We will continue to pray for a miracle and expect God to put his hips back in place. We will still pray that Malachi’s brain can heal and that he will be able to move his ankles, knees, and legs. Psalm 42:11 “But O my soul, don’t be discouraged. Don’t be upset. Expect God to act!“
We will choose to not insult God with thinking we can limit His power with our unbelief.
As you can imagine, we tend to turn a lot of heads in public places. It isn’t every day that you see a three year old in a wheelchair! On our way to Vanderbilt we stopped at a local breakfast place to fuel up for our busy day. An older couple stared at Malachi for the better part of 45 minutes, so it was no surprise to us that they stopped by the table on their way out to leave. He said: “That is one happy boy.” And as I looked at Malachi grinning at this man, my heart warmed and I replied: “Yes, we are very blessed.” The man’s face changed as he processed what I said. His eyes seemed confused, then a smile came across his face as he said: “Huh. What a positive way to look at it.”
As I thought about that man, I understood the confusion on his face. When an outsiders sees a three year old boy in a wheelchair, struggling to get his brain to cooperate with his body, I can imagine that “blessed” isn’t the first word that comes to mind. But as I replay Malachi’s fight for his life, and the struggles our family has faced I can’t help but feel so enormously blessed by the happy boy God has given us.
We are uniquely blessed.
When you sit back and think about what could have been…what different outcomes could have happened in a situation…it reminds us to search for the blessings, no matter how hidden they may be. Thank you, Lord, for your seen and unseen blessings.
I found a new song this week that has been speaking to me. If you are struggling finding meaning in trials, please take time to listen to it. https://www.youtube.com/watch?v=1CSVqHcdhXQ
Malachi has had a great week. My sister-in-law joined me for our Vanderbilt day and we had a blast! We even took Malachi to the Rainforest Cafe so he could listen to all the jungle animal sounds. His vision was actually decent in the low lighting of the restaurant and he looked around with wide eyes and a big smile most of the meal. We just made sure to cover his eyes whenever the fake storms began in case the flashing lights might spark a seizure. We were in the car for 8 hours that day, and he didn’t even cry or fuss a single time! That is a record!
He is still such a silly boy who loves to go on adventures. He is so incredibly playful these days and will make a game out of almost anything. Even kitchen cabinets…
Please continue to pray for miracles in Malachi’s life. Pray that the peace of God that Jake and I experienced this week through our tough decisions will continue to overwhelm us concerning Malachi’s life. Pray that God grants us the wisdom we need to allow Malachi’s life to fulfill God’s good and perfect will.
And a final request, please pray for my very sick grandmother this week as she is in the ICU battling pneumonia and a secondary infection.
Thank you for taking the time to check in on our Malachi.
Jake, Leah, and Malachi