World Cerebral Palsy Day: Makenzie's Story
Author: Brooke, Makenzie's Mom
October 6, World Cerebral Palsy Day, a day that I never knew I would be celebrating; a day that had no significance to me before April 17, 2018. The day that my life changed forever. The day that I gave birth to my daughter Makenzie at 23 weeks and 6 days gestation.
When my husband and I decided we were ready to start a family we wanted to make sure we did it the right way. I stopped taking birth control and switched to prenatal vitamins. I wanted to take prenatals for a full 3 months before we started trying to conceive just to prepare my body as much as possible for harboring a baby for the next 9 months. Once we started trying, I was pregnant within the next month or so. We were absolutely ecstatic to finally be starting a family as we had always dreamed of. The first trimester flew by and I was feeling great. I did not have any morning sickness, maybe a little fatigue but it was fairly mild, and I was so happy that I survived what was typically known as the worst part of pregnancy. My 20-week anatomy scan came and went, and I was reassured that everything looked normal and that our baby girl was growing on track.
However, soon after that, I was cleaning up at work getting ready to go home for the night when I felt an abnormal amount of fluid in my underwear. I quickly called my husband who was at work but told me to head home and he would meet me there. On my way home, I also called my mom because let's be honest, I had no idea what to do and I knew she would help me figure it out. Her advice was to call the hospital and see what they wanted me to do. Because I was 23 weeks pregnant, the nurse on call told me to go into the labor and delivery department to get checked out just to be safe. So my husband and I got back in the car as fast as we could and headed straight to the hospital. In the triage room, they ran a few different tests before they were able to confirm what was happening.
The doctor came in and said, "Brooke, your water broke." At that moment, I heard what she said but I didn’t really hear/process what she said. She then followed up by saying “You are going to need to stay in the hospital until you give birth. About 50% of women give birth within 24 hours of their water breaking but some women can keep the baby in for weeks until giving birth.” At this point, I was hysterically crying. There was so much fear of the unknown that was racing through my mind. “The best thing for you would be to transfer you to a different hospital because if you do go into labor soon, we don’t have the equipment at this hospital to care for a baby born that early.” Next thing I know, I was being loaded up into an ambulance and hauled off to another hospital where I was going to stay until my daughter was born. Less than 12 hours later, I was dilating more than the doctors wanted and we had an ultrasound to confirm she was still breech. Ultimately, they decided it would be safest if I went ahead and had an emergency c-section to deliver my daughter. On April 17, 2018, at 11:06am Makenzie was born. She was only 23 weeks and 6 days gestation and weighed 1lb and 4oz.
Before she was born, the doctors had given us all these statistics of babies born at her size and gestation and the likelihood that they would have disabilities. They also informed us of some of the common complications that babies born that early typically face. One major complication was a brain bleed. Because the babies are so small, the blood vessels in their brains are very thin and can easily rupture during birth which causes bleeding in the brain. On the morning of day 3 of her life, the neonatologist came in and sat with us at Makenzie’s bedside. She then informed us the results of Makenzie’s head ultrasound came back and Makenzie had suffered a Grade IV brain bleed on both sides of her brain. Grade IV being the most severe type of brain bleed you can have, meaning there in blood in/near her ventricles and also blood in the brain matter itself. The doctor told us that because she had bleeding in the brain matter, she would be at a higher risk of developing developmental delays depending on what area of the brain was affected by the bleed. A few weeks later, Makenzie had an MRI that showed us the bleed mainly damaged that area of her brain that controlled motor movements and she would likely experience tightness in her legs and ankles as she got older, aka Cerebral Palsy. I do not remember much else from that conversation. I just remember feeling so helpless. At that moment, I was not even sure if my first-born child would even survive because she was so sick and so fragile and now, I am learning that if she does survive the likelihood of her having permanent disabilities just skyrocketed.
As time went on, Makenzie grew stronger and stronger. She faced other common NICU complications but was always able to overcome anything that was thrown her way. Finally, after 134 days in the NICU, we were able to take Makenzie home. She was 4 months old and only weighed around 7.5lbs. But we were just thankful to have her home so we could finally start our life as a family. When Makenzie was 9 months old, we started physical therapy twice a month with her through our local early intervention team. At that point in time, Makenzie was still struggling with full head control during tummy time, she couldn’t roll, and she was nowhere near being able to sit. Over the next couple of months, she was making some progress, but it was generally slower progress than our therapist expected. Makenzie started crawling at 13 months old which I was very excited about and didn’t think anything about how awkward and uncoordinated her crawl was. She would “bunny hop” or “frog hop” when she crawled which meant she was using her hands like a normal crawl and then dragging her legs behind her. When Makenzie was 14 months old, she was able to pull herself to stand using the couch. It was about this time that I started noticing something wasn’t right. Makenzie wouldn’t stand up straight, she always kept her knees bent and kind of hunched over. She also didn’t like to bear weight through her right leg. She preferred to stand with most of her weight through her left leg and would leave the right leg bent and behind her. When she did pull herself to stand, she had very bad balance and would often fall straight back because she didn’t know how to catch herself. When she would try to walk with a push toy, she would typically lean forward and fall before she would move her legs to take steps with the toy. When I brought up these concerns to her physical therapist, she said we can do our best to correct these abnormal movements but "you're most likely looking at a Cerebral Palsy diagnosis so go ahead and prepare for that because these movements might not be able to be corrected.”
With that conversation with her physical therapist in the back of my mind, we went to Makenzie's NICU High-Risk clinic appointment where multiple doctors assess her abilities and keep track of her developmental progress. Makenzie was now 19 months old and still lacked the ability to stand independently or walk. When Makenzie was showing the doctors that she could cruise along the chairs in the room, one of the doctors noticed how she awkwardly held her right leg and how she was apprehensive about putting too much weight in that leg. They asked me to remove her shoes and did a quick evaluation of her ankle movement and noted that her right ankle was extremely tight and her hamstrings on both legs were tight and had limited range of motion. They then referred us to see a neurologist who could tell us more about this tightness and help treat it.
Going into that first appointment with the Neurologist, I knew he was going to diagnose Makenzie with Cerebral Palsy. I tried to wrap my mind around it and come to terms with it before that appointment so I didn’t completely lose it during the appointment. We were probably in his office for 20 minutes. It didn’t take long. It was pretty obvious. He did a quick physical exam, testing her flexibility and range of motion much like the doctors in the High-Risk Clinic did. He quickly confirmed she had abnormal tightness in her legs and told us the tightness was from the brain damage Makenzie had sustained from the brain bleed at birth. He said we classify this type of tightness as Cerebral Palsy, more specifically as Spastic Diplegic Cerebral Palsy. Cerebral Palsy Is a physical disability that is caused by damage to the brain. It affects how the brain sends signals to the muscles in the body. Spastic means tightness and diplegia means it affects the same body part on both sides of the body. For Makenzie, it affects her legs. Because of her Cerebral Palsy, we now see the neurologist regularly. He has given Makenzie multiple Botox injections in her legs to help temporarily reduce the tightness in her legs. She has to have these injections repeated every 3 months to give her the best chance of building muscle in her legs without the normal tightness. We also see an Orthotist. He makes casts of Makenzie’s feet and ankles for braces that she wears. She is currently wearing an AFO (ankle-foot orthotic). This brace helps combat the tightness in her ankles by keeping her ankles at a 90° angle to give her more stability and balance. Even with the Botox and the AFOs, Makenzie still requires a walker to help her walk. She loves walking and is very eager to start walking independently but at 2.5 years old now, she still lacks balance, coordination, and confidence to take independent steps. However, Makenzie has been given the opportunity to undergo a life-changing surgery that will hopefully be the last push she needs to start walking independently.
We will be traveling to a Neurosurgeon in St. Louis, Missouri who will perform a Selective Dorsal Rhizotomy (SDR) on Makenzie on October 21. This is a spinal surgery that will eliminate the tightness in Makenzie’s legs. Without the spasticity (tightness) in her legs, Makenzie's balance will improve. The range of motion in her hamstrings and ankles will improve, the pain from having tight muscles will improve, and ultimately her future quality of life will improve. Will Makenzie ever walk without an assistive device? I don’t know. Will she ever be independent enough to live on her own? I don’t know that either. But what I do know is that Makenzie has a strong desire to walk, she has a strong desire to be independent and that desire and determination will help her accomplish anything she puts her mind to. It’s important to understand that Cerebral Palsy is an umbrella term meaning it affects every child differently. You can have two children side-by-side with the same brain damage, and their physical development can still be completely different. CP may be a permanent disability but it doesn’t change anything about our children. They are still strong-willed. They are still able. Cerebral Palsy doesn’t define who they are and it shouldn’t define how they are treated.
There have been a lot of other families on Instagram who helped me along our journey with Cerebral Palsy. These families would give me hope when I had none. Would be a listening ear when I was confused or frustrated beyond anything. These families made me realize that having a child with CP wasn’t going to change a single thing:
So on October 6th, World CP Day, a day that now means SO much to me, I am finally sharing our story. Our story of how our daughter was given less than a 20% chance to survive, a living miracle. Our story of my daughter who has Cerebral Palsy. With her major upcoming surgery and recovery, I will be sharing a lot about our experience. You can follow us on our journey on Instagram or on Facebook .