Lawson’s Story

Site created on September 9, 2019

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place.  After our regular OB was concerned at our 18-week anatomy scan, we were referred to the high risk Maternal Fetal doctors at UAB.  On August 26th, our precious 3rd boy on the way, Lawson, was diagnosed with a neural tube defect (Spina Bifida).  Although devastated and in shock, we immediately started researching our options, which led us to the Children’s Hospital of Philadelphia (CHOP).  We flew up to Philadelphia for a long 2 day consultation that consisted of meetings with their group of surgeons, comprehensive ultrasounds, MRI & echocardiogram. We then learned that Lawson has the most serious and common form of Spina Bifida called myelomeningocele (MMC), in which part of the spinal cord and surrounding nerves push through the open bones in the spine and protrude from the back. He also has the Chiari hindbrain malformation in which the back of the brain is pushed into the upper portion of the spinal canal in the neck due to a build up of spinal fluid in the brain. We were left with two options:  post-birth surgery within the first 24 hours or fetal surgery during pregnancy that would have to be done between 23 weeks and 25 weeks, 6 days. It became clear to us very quickly that the prenatal surgery is the best option for us. Although the surgery is not a cure and can’t repair any damage already done, it prevents further damage from occurring.  It will also dramatically reduce the need to eventually divert fluid from his brain with a shunt, improve the chances that he will be able to walk independently and reverse the hindbrain herniation.  After the surgery, I will remain in the hospital for five days, then will be released with a wheelchair on very strict bed rest for the following three weeks. I will then have to stay in Philadelphia and be monitored each week for the remainder of the pregnancy.  This is by far the toughest decision we have ever made. We will be leaving Raleigh (4) and Cason (2 1/2) here with my parents in Birmingham. While we know they will be loved and cared for while we’re away, it breaks our hearts to be separated from them. As long as everything is going well we can bring them up for visits after the first few weeks. As of today, we have scheduled the fetal surgery for Friday, September 27th, leaving us just two weeks to pack what we need for the next few months and find a place to live up there. We fly up on Sept 25th for all our pre op testing and final meeting with the doctors on the 26th. We can’t even begin to tell you how much we appreciate all the phone calls, texts, meals, flowers, etc. We have the best support system and there is no way we could get through this without all of you. Most importantly, we know that God is the ultimate healer and will carry us through. We know that He has such amazing plans for Lawson’s life. Lawson is our rainbow baby that was formed on purpose with a special purpose. He has called us to be Lawson’s parents and He will prepare us. This little guy is already so loved! The cover picture is a rainbow we saw outside the window of the plane when we were coming into Philadelphia last week and we know it’s a sign from God that’s he’s looking out for us. Thank you so much for your continued prayers! XOXO💙💙

Newest Update

Journal entry by Whitney Lugo

Lawson has been working so hard in physical therapy these past few weeks. He is so determined. His therapists immediately put him in a walker after his cast came off and he has gone from needing lots of assistance in January to using it to walk across the room by himself! He calls it “red.” We have even started taking it to his preschool and he will use it in his classroom or on the playground. He is so proud of himself and it’s the cutest thing to see him get  so excited at his new independence. His left leg is still much weaker than his right, but we’re hoping that once he builds up his strength he will be able bear weight more equally. We just picked up his new hip brace that he wears while he sleeps to keep his hips in a good position. We will follow up with his doctor by video chat in May. We will repeat scans on that left hip this summer to keep a close eye on it.

We finally received his first wheelchair! We started the process in September so we were so anxious for it to get here. Since he had a loaner one while we waited, he knew just what to do. He will take off and then start going in circles, laughing the whole time. It’s moments like this that warm my heart. It’s easy to get caught up thinking of the other children his age running around, climbing on the playground, but Lawson doesn’t know any different and he will find his own way to keep up. My favorite is watching him wheel himself out from The Bell Center. He stops at the double doors and starting waving and laughing. That is PURE JOY!! 

We also had another visit with all his doctors at the Spina Bifida clinic and he got good reports from everyone! We will go back for his next visit in July.

In February, The Bell Center held the kids race as part of the Mercedes Marathon weekend. It was so heartwarming to see all the kids crossing the finish line. Lawson got upset because it was so loud, but with the help of his physical therapist was still able to make it with his walker (big tears and all-from him and us). Lawson was so fortunate to have 2 of our dear friends running the full marathon in his honor. Beth and Anna Ruth were rockstars and we are so thankful for them. 

We love you all!

“For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”
Ephesians 2:10

“The heart of man plans his way, but the Lord establishes his steps.”
Proverbs 16:9

“Don’t be afraid; just believe.”
Mark 5:36


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