Every Mama has instincts. And for this Mama, Angie Walton, these instincts kicked in immediately after her son was born.
Angie began by sharing how she and her husband Brad had a beautiful daughter, Amelia, whom they nicknamed Milly. She had a pregnancy that went along fairly normal, although she was diagnosed with Gestational Diabetes. Two years later when she got pregnant with her son, she monitored her sugars, carbs, and diet the same. One significant difference from her first pregnancy was that her son dropped 5 weeks early. He was head down and he was essentially sitting cross-legged for the remainder of her pregnancy. She did not feel comfortable doing a V-Bac (Vaginal Birth after Cesarean), so they had scheduled a c-section. She and Brad had decided they were done having children and had decided that she would also have her tubes tied. She called the hospital when she thought she was in labor, and they were admitted and checked in as normal. Angie remembered feeling very anxious as they began the C-Section. The nurses and doctor were pushing on her stomach but her son was stuck and they could not get him out. Shortly after, though, they were finally able to deliver him. She heard his beautiful cry; a glorious sound.
But upon first glance, Angie noticed that something wasn’t right with her son’s head. She remembered one of the doctors saying, “Holy cow he has a huge head…” and she noticed that from the front, their son, whom they named Bane, looked completely normal. From the back, though, there was a hematoma on his head and he looked like he had been vacuum-sucked. There was a three-inch ridge of bone on the top of his head and it was cone-shaped, likely from having dropped so early on. Sitting in this position for this length of time raised concern about hip dysplasia. As if this wasn’t enough, he had some jaundice and was under the lights to help his bilirubin levels regulate.
The doctors did not comment on or say anything about his head, which Angie believes is because doctors are not able to diagnose this condition until babies reach two months. She remembers thinking, “He’ll probably grow into it…” At his two month check, they received some answers. They brought up to the pediatrician that they had concerns about the shape of his head and she remembers the doctor so assuredly feeling his soft spots and saying, “I am concerned he has Craniosynostosis.” She and her husband asked, “What is that?” To which her reply was, “Well, it’s when a baby’s skull forms together prematurely. It disallows the brain to grow which eliminates the soft spot to allow for growth. You need to get an appointment with Dr. Wood at Gillette’s in St Paul. You need to get in next week. The only way to fix it is surgery.” Angela instantly began to cry.
The couple made their appointment for the following Tuesday. They still didn’t know anything about what this was or what the surgery would entail, but on their first weekend away since Bane had been born, they spent their free time researching. She recalled, “It was really good to be away and have some alone time, but it was nerve wracking. We wanted to research to find out what was going to happen. Once we began reading we knew what it was and we were prepared for him to have the surgery. We went to see the Craniofacial doctor, had a CT scan, and it was confirmed. It was so weird seeing a normal skull compared to Bane’s. They proceeded to meet with the neurosurgeon who stated, “This type of surgery is a walk in the park for us.” One-hundred and twenty of these surgeries were done in MN and ninety-one of those were done in by this team of surgeons. They are one of the top teams in the entire world and are one of the first to have an FDA approved procedure in place to perform this surgery.
Bane was scheduled to have his surgery at four months and one day. He was a happy boy and was hitting milestones and moments right on track. However, Angie and Brad knew that if they didn’t take care of this problem now, there could be learning disabilities, brain damage, and even seizures in his future. Prior to surgery the doctors gave Bane Epogen shots which are a blood booster to boost his blood count. The hope was that with these shots, two in each thigh, once a week for three weeks before surgery, the medication would likely reduce any chances of needing a blood transfusion. In the meantime, the family took serious precautions to prevent him from getting sick because they did not want to delay his surgery. Between Angie and Brad, the couple took time off work, worked from home, and pulled him from daycare. If Milly came home from daycare she was instantly changed into new clothes, and they were relatively homebound as to keep him free from exposed germs in public.
A week before surgery Bane went through his normal pre-op. They did virtual head scans to get a 360 view of his head so while they did the surgery they could use it as a visual. Angie remembers feeling like she, “… never took the time to sit down and understand what was going to happen until the night before. We packed up our things and got everything ready. But it wasn’t until we were in the car on the drive down that it felt real. This made me so anxious–to the point where I felt as if I had had three coffees!” They arrived at the hospital and checked in to the pre-op area. Dr. Wood, their surgeon, was very matter of fact. He asked, “Do you guys have any questions?” Brad’s response was “No.” He looked at Angie and she started crying. His reply was, “Ok bye then.” Again, so matter of fact! Doctors are gifted in so many ways 🙂
She teared up as she remembers the moment where she handed her beautiful Bane over to the nurses for surgery. “He looked so sweet in his little purple gown,” she said. They waited in the waiting room and watched the screen that shows the progress of surgery. But then she received a phone call an hour and a half later, from an unavailable number. Angie shared, “The nurse on the other line called to confirm Bane’s date of birth and asked me if I was Bane Walton’s Mom. I thought something bad had happened. Turns out they were only calling to let us know they were done prepping for surgery. That was wild! This whole day had been small sections of different anxiety. Bringing him there, Check. Handing him over to the nurses, Check. Answering this crazy phone call, Check.”
Bane’s surgery went flawlessly. Because of his blood boosting shots, he did not need a transfusion. His surgery was quick; they cut his skin from ear to ear and cut a wavy line (Angie described it as looking similar to a baseball lace line) to pull back the skin. The neurosurgeon team removed the fused bone–cut it out with a saw–opened up the sutures, and put the plates back in place. They were able to recreate his soft spot and close it back up. At one point the doctor called to let them know that they were closing up, and commented that he thought Bane was a nine month old because of how thick his four month skull was! He had a near total Calvarial Remodel and his head is essentially manmade. She recalled, “It was a huge weight off and it felt so fantastic to see Dr. Wood come out and tell us everything went well and that Bane was in recovery in the PICU. But then we had to prepare ourselves for what he would look like. We wondered if his eyes would be swollen shut or if his head would be covered. We went back, I saw him, and had immediate tears. We had been documenting through pictures and journals through this experience, so Brad was able to take some photos. He did so well coming out of his anesthesia. He was our little all star!”
They were able to go home on Thursday afternoon. Bane, with his newly constructed skull, fifty stitches, and his parents, learned from Dr. Wood that he was fine and his head was now perfectly round. He went home with just a bandaid and they were told to rotate Tylenol & Ibuprofen if needed. He would not need any follow up surgeries, helmet therapy, and could return to daycare the next week. Even with this news, the protective parents kept him home for a few extra days to love up on him as his wound healed.
Angie felt, “Grateful for our pediatrician who did her residency in the Craniofacial unit and knew a lot about this even though she had never diagnosed it. We also had the two best surgeons in the world on our team, and they were amazing.” She finished her story by sharing how he is just a perfectly normal, wild, and crazy toddler. “He’s fearless.”
It was so wonderful to reconnect with a Mama I haven’t seen since high school. I had seen a post on her Facebook wall about Cranio Care Bears, and I felt compelled to reach out. I wanted to know more about this and learn what this experience was like by hearing her story. I was able to learn about their journey and she showed a beautiful side of strength, dedication, and love for her little Bane.
XO,
Linds
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