Patrick’s story began long before Patrick was born. As homeschooling parents of ten children (at the time of his delivery), we faced many challenges and difficulties. We had a teenage son who was in a car accident and sustained a traumatic brain injury and shattered pelvis. We had many children who had different learning challenges and struggles. Two years before I became pregnant with Patrick, we began working with an organization that helps improve the lives of children with all manner of challenges from severe special needs to high giftedness and everything in between, NACD (National Association of Child Development).
In March 2017, at our 20-week ultrasound, we were told that our son, Patrick, had myelomeningocele (MMC) or Spina bifida. We would be unable to deliver him at any hospital close to our home. He would need to have surgery very soon after he was born. This was quite a blow. First, because instead of the home birth we planned, we would be traveling and away from the rest of our children for a significant amount of time. Secondly, there was the diagnosis to come to terms with, starting with going home and looking up the term.
We very quickly decided to go to Cincinnati Children’s Hospital Medical Center for delivery. We went for preliminary testing, and we qualified for prenatal surgery. After much thought, prayer, and consideration, we decided against pursuing prenatal surgery. Our reasons were threefold: I had recurrent miscarriages prior to getting pregnant with Patrick and we did not want to have any additional risk of losing the baby, my advanced maternal age meant that I was more likely to have complications after the surgery, and we were not greatly impressed with the difference in outcomes as it related to mobility. At that time we found out that Patrick’s lesion began at the T12 vertebrae. (T stands for thoracic level.) This is quite high and is a more severe form of Spina bifida. His prognosis was that he would never walk, would likely never have any movement or sensation below the waist, and would be unable to urinate or control his bowel movements. Thankfully, we were experienced at ignoring the prognosis and doing everything possible to get as much function as possible from each individual child.
We had learned that from our experience with NACD. Our oldest son had a traumatic brain injury and had completely recovered within a year of his car accident (an unheard-of outcome.) He experienced no depression and only the slightest long term impairment of his short term memory. He is now married with seven children and owns his own business. If we had listened to the “medical experts” we would have never pursued doing his therapy at home and using an alternative to traditional physical and cognitive therapy.
Immediately after our prenatal diagnosis, I called our NACD evaluator and talked through everything we knew about Patrick and everything we could do moving forward to help him as much as possible.
Patrick was born at 39 weeks, 2 days by vaginal delivery. (We could not find research that proves improved outcomes from delivering by C-section.) His closure surgery was 16 hours later. We began to catheterize Patrick eight times a day at that time. We were in the NICU for three weeks while they monitored his spinal fluid pressure. At that time, they decided to place a VP shunt (which was not unexpected, considering his lesion level) and we went home two days later.
As soon as he recovered from shunt surgery, we began therapy with him. Patrick’s first year was quite a ride. Just before Thanksgiving, his shunt failed and we spent Thanksgiving weekend in the hospital with him replacing a clogged catheter, the piece of the shunt that goes down in the fluid around the brain. In mid December, the shunt failed again and at that time they decided to add a second catheter. Again, as soon as he was fully recovered from surgery, we began what we call “doing program“ with him. By eight months old, he was crawling and pulling to standing.
Patrick had one more shunt repair surgery in January 2020. Unrelated to spina bifida, he had tubes put in his ears in June 2019. Patrick now caths himself into the toilet and has most of his bowel movements on the toilet as he can feel when he needs to go. Patrick can stand independently for up to 30 minutes. He can take about 10 steps independently. He takes two medications. Oxybutynin is to relax his bladder. He is on a very low dose of this. He is currently taking a small amount of senna before bed, but we are in the process of transitioning him off of that and on to Cleanse More made by Renew Life. He has only had two UTIs, and none in the past five years. Patrick’s MRI imaging looks terrible, but his function is amazing.
With NACD, we have evaluations with our evaluator three times a year, two in-person and one via video conferencing. In addition to our evaluator, I have a coach that I can talk to as frequently as I want, usually every other week or once a month depending on what challenges we are having. I can text and email my evaluator and coach at any time with questions, problems, and successes, which I do. We do all his therapy at home—physical and cognitive. Unfortunately, Patrick also has some learning challenges unrelated to spina bifida, but that are common for our children. Thankfully, our NACD evaluator caught those problems early on, and his program addresses those challenges, as well.
Although Patrick continues to crawl for most of his mobility, we have chosen not to add any additional assistive devices beyond his AFO‘s because we are optimistic about his ability to get strong enough to walk independently without arm crutches, or to be in a wheelchair. I credit our involvement with NACD which provided interventions that kept us from needing the additional surgeries that are so common for children with spina bifida.
Patrick is a very social young man. His best friend is his younger sister. He plays with his nieces and nephews on a daily basis, crawling all over our homestead and mountain. Because he is homeschooled, we did not have the pressure of achieving certain milestones by a certain time. We have been able to move at Patrick’s pace. Much of Patrick’s physical program is done with the help of one of his older brothers. NACD is a whole person, whole family approach.
We look forward to exploring other ways to use natural means to improve Patrick’s quality of life. We are due for urological imaging. Once we get a good look at that, we plan to move forward with weaning him off the oxybutynin and pursuing a more natural path for treating his neurogenic bladder.
We are so grateful for NACD and our involvement with them from the very beginning of Patrick’s life. Unlike many families, we have not had to spend a lot of time, energy, and money pursuing various therapies that have outcomes that aren’t as good as they are promised to be. We have been able to focus all of our energies into executing an effective approach to helping Patrick get as much function as possible.