Our precious son was born on September 19, 2010. This date instantly became the most special day of our lives as Ford, our tiny blessing, made his way into our hearts. Ford is a very happy baby, seemingly smiling from the moment he was born. Soon after that joyous day of our first face-to-face meeting with our son, my husband and I began noticing that certain things about Ford didn’t seem quite right. The first thing that struck us was his breathing which was very rapid and seemed to emanate from his belly rather than his chest. The doctors assured us that Ford’s irregular breathing was only temporary as he was just acclimating to breathing air after being in the womb. We also noticed that Ford’s feet flopped out like a frog’s and that he seemed to hold his head to one side. After meeting with two specialists related to these issues, Ford got a clean bill of health and was referred to simple physical therapy to strengthen his neck muscles.
During Ford’s four-month well-baby visit, his pediatrician was concerned that he was not meeting many of the milestones for his age. She thought it was more than Ford being a little behind developmentally, so she referred us to a neurologist at the Children’s Hospital. To our great dismay, the neurologist found that Ford showed no indication of reflexes. The doctors performed a blood test, the results of which would not be available for four to six weeks. The same day of this visit, Ford’s pediatrician called to share the findings of a conference call she held with Children’s Hospital staff. The neurologists stated that Ford had a terminal disease called Spinal Muscular Atrophy. Neither Scott nor I had ever heard of this disease, but we quickly learned the prognosis for its victims: one year to live, two at the most. This news rattled us to the core as all the hopes, dreams and expectations we had for our child flashed before our eyes. How could our innocent son potentially be facing this diagnosis? A six-week wait for test results was out of the question, so we researched the disease and traveled to the Children’s Hospital in Philadelphia. We found a neuromuscular specialist who would give a firm diagnosis within five days. On February 3, 2011, Ford was definitively diagnosed with Spinal Muscular Atrophy-Type 1. So began our journey to fight with Ford against this horrific disease.
As a mother, you dream of taking care of your child until he is grown, nurturing him, protecting him and teaching him. As a father, you dream of playing football with your son, working on cars together and teaching him to be a good man. To have someone tell you that you may not get that opportunity is something for which a parent can never prepare. It is profoundly life-altering and heart-shattering. Our family chose to take a stand and fight with (and for) Ford against SMA. We immediately started Ford on the cough assist and suction machines just to get him used to them. We took every preventative measure to get Ford ahead of this disease before it got the best of him and his little body.
At six and a half months, Ford was given a g-tube (feeding tube), as are most children with SMA due to the loss of the ability to swallow. Ford was still able to eat by mouth when we chose to do the surgery, however, we thought it was best for him to get it sooner rather than waiting. Type-1’s can lose their swallow suddenly, so waiting to put in the g-tube when it becomes necessary leaves the child open to the possibility of aspirating, which can be fatal.
On March 21, 2011 Ford went into surgery which was successful and had no complications. He came out of the anesthesia without issue, however his CO2 levels measured high. What was supposed to be a 2- to- 3- day hospital stay turned into five weeks of Ford fighting for his life after contracting RSV while in the PICU. We knew Ford was a fighter after we almost lost him twice in the hospital. Doctors tried to extubate twice unsuccessfully, so our little Ford was intubated 3 times in just 5 weeks. He was finally extubated successfully and was placed on a nasal cannula, then a bipap machine. Once we got Ford used to being on the bipap, we were gradually able to give him breaks from it. Although it does not breathe for him, the machine does allow him to get the rest he needs while he sleeps. His journey in the hospital was hard, but our little fighter overcame the trial of RSV and we were finally able to bring him home. Sadly, the RSV had taken a noticeable toll on Ford’s already-weakened body and we continued to fight its effects for months.
Ford came home with a lot of new equipment and our house soon looked more like a hospital than a home. We now have a bipap machine to help him breathe and a feeding pump which means that his feeding tube has become his sole source of nourishment. Ford also has a nebulizer that allows us to administer medication through a mist and he is hooked up to a pulse oximeter which displays his heart rate and oxygen level. The last piece of equipment we came home with was a chest vest machine which helps loosen secretions in Ford’s lungs. When our family was stricken with this disease we made the only decision we could: We educated ourselves and do everything in our power to give our son the best quality of life possible. Scott and I have had to learn everything from administering medication through Ford’s g-tube to doing three treatments per day to keep his lungs clear and healthy. We have become full-time nurses, dieticians, respiratory and physical therapists. We will continue to help Ford fight his battle against SMA.
When SMA became a part of our lives we found the SMA community. It has been an invaluable blessing. We were accepted into this community and given the ability to ask all the questions we had. We received educated and informative answers from very experienced families at different stages of their SMA journeys. We are able to share our own stories and have gotten indispensable advice from those who have already been in our shoes. I attribute Ford’s quality of life largely to the SMA community. They have helped us learn so much about this disease and have assisted us in the acquisition of all the necessary equipment and supplies we need for Ford. They have educated us out of experience and from the heart on topics such as equipment and nutrition, something the doctors with all their medical expertise could not do. We thank the SMA community for its unwavering support to families battling this disease and are grateful for the privilege of contributing our knowledge and experience as a way to give back to the community that has given us so much.