by his mother
Nothing could have prepared my husband Dan and I for the shocking news we received last September. That is when we were told that our five year old son, Braden, has pulmonary hypertension.
When Braden was born on May 12, 1998, he seemed perfectly healthy. He was a beautiful blue-eyed baby boy who grew and reached all of the normal milestones until the age of twelve months. Then he began to fall off the growth curve. At that time, our family doctor referred us to a pediatrician and Braden underwent several tests for failure to thrive. Everything came back normal and we breathed a sigh of relief. He continued to remain healthy so we gave it very little thought after that point. Life continued on normally and in March of 2000, twin brothers Jarrett and Rylan arrived and life got pretty busy around our house! Braden’s toddler years progressed normally and aside from a couple of bouts of pneumonia and other bronchial infections, he remained healthy.
That all began to change around the time of Braden’s fifth birthday. He started to complain of fatigue and coughed excessively at night often to the point of vomiting. He was diagnosed with asthma and began using puffers. It was also at this time that my husband was transferred to a small town about an hour from the place that we had always called home. This was a stressful time for all of us and we attributed some of Braden’s complaints to all of the changes going on in our lives. But strangely enough after starting the puffers, Braden’s symptoms seemed to worsen. We began noticing that he was often short of breath and that his lips would occasionally turn blue. We continued to associate these things with asthma. When I mentioned the blue lips to our pediatrician in July she became concerned and although his heart still sounded fine, she decided to book him for an echocardiogram. It was scheduled for December and we were still not overly concerned.
But then, during a trip to Prince Edward Island with friends on the Labour Day Weekend, Braden’s condition got much worse. He was unable to keep up with his little brothers and friends in the playground and remained very sluggish the entire weekend. He woke up one morning with his face looking swollen and we were afraid he had had an allergic reaction. We called our family doctor right away and made arrangements to see him as soon as we returned home. He quickly arranged to have Braden’s echocardiogram moved up to September 8th and in the meantime we took him for an ECG and blood work. By this time I knew that something was seriously wrong. By the day of the echo, he was swollen in the face and abdomen and was also sick with a virus. We brought him in for the echo and were sent immediately after to our pediatrician’s office where she gave us the news, our little boy had a rare life-threatening illness - primary pulmonary hypertension. We were stunned and shocked and completely unprepared for the diagnosis. Like most people, we had never heard of this disease and at that time did not have a clear picture of what it meant for our son.
Things happened very quickly from that point on. Braden was admitted to hospital in Saint John, NB and airlifted to the IWK Children’s Hospital in Halifax two days later. As he was sick with a virus, we had to wait several days before a cardiac catheterization could be performed to confirm the diagnosis. We prayed that they would find something else as by now we had learned more about PPH and exactly what the diagnosis meant. However, the cath confirmed the diagnosis and Braden was then started on many medications in hopes of stabilizing him including sildenafil (or Viagra as it is more commonly known) which they hoped would help to reduce his pressures. We were given a very poor prognosis and, once Braden was stable, were sent home in a state of shock with very little hope.
That was two years ago and since that time, we have been riding the roller coaster that is life with PPH! Braden did very well for almost a year after his initial diagnosis. He had a great year! In May of 2004, he celebrated his sixth birthday and was granted a wish by the Children’s Wish Foundation which allowed our whole family to travel to Disney World where we spent an amazing week together! Braden then took part in the Children’s Wishmaker Parade as Parade Grand Marshal and together with his team raised almost $4,000 for the foundation!
We have been working hard to find out as much as we can about PPH in the months since his diagnosis. Last June, my husband and I were fortunate to be able to travel to Miami for the PHA conference where we learned so much more about the disease and met many wonderful people! We returned home with a renewed sense of hope and determination. We are now looking forward to the 2006 conference in Minneapolis and hope to bring Braden along with us this time so that he may meet other children who have been affected by this disease.
Braden’s health improved a great deal in the first year after his diagnosis but last October we noticed a decline in his activity level. On a routine check up at the Hospital for Sick Children in Toronto, they noticed many changes and decided to do another cath. They found his pressures to be back up to where they were last year and his lungs to be considerably damaged. Our hearts broke again when we were told that we are getting closer to the point of needing a transplant - not at all what we were hoping to hear. But Braden was then started on Tracleer and we have begun to notice improvement again in his condition. He had a wonderful summer this year and has now returned to school as a happy second grader! His activity level is much better then it was this time last year. We are hoping that this means a transplant is still a long way off for him!
Although this has been and continues to be a very difficult time for all of us, it has brought us closer as a family. We no longer worry about the small things and try our best to live each day to the fullest. Watching Braden go through so many tests and procedures and remain so strong has shown me just how hard he is willing to fight! He is such a brave little boy and has taught us all so much! We are very blessed to have many great friends and family members who have helped us to get through the roughest times - we couldn’t have done it without them! We are very grateful to have them in our lives and know that with their help we will get through this journey no matter where it leads us.
We enjoy hearing from others who are dealing with PH and can be reached at firstname.lastname@example.org.