A statement from Celeste Goodwin
NPBPAF Founding President
"I saw the necessity to found the NPBPAF after my family’s own experience with un-diagnosed hypertension. My son's journey with hypertension began when he was four years old. In March of 2007 my son, Matthew, had routine, out patient, surgery to have tubes placed in his ears and to have his tonsils and adenoids removed. He began vomit severely after being home for a few hours and he had to be brought to the emergency room. He was subsequently admitted after spending over 6 hours in the emergency room. Upon admission his blood pressure was 195/135. This was potentially life threatening for a four year old child. I want to note that his blood pressure was not taken one time during the entire 6 hours he was in the emergency room. (Understand, this was in 2007 and not all emergency departments routinely took blood pressure readings as part of normal triage of all pediatric patients.)
After several readings of dangerously high blood pressures he was admitted to the PICU. For a parent, you never want to see your child in that environment. Matthew was gravely ill. After six days he was transferred to the PICU at Children’s Hospital in New Orleans, LA. He was then diagnosed with renal artery stenosis. In simple terms, there was a blockage to the main artery in his left kidney that was not allowing sufficient blood supply. This was causing the severe hypertension (high blood pressure).
A month later in April of 2007 he had a balloon angioplasty procedure to open the artery. A temporary fix until he could get older and stronger. In December of 2008, two days before Christmas, Matthew underwent an auto kidney transplant. This became a necessary measure to save his life because the daily hypertensive medications were no longer working to control his hypertension. His own kidney and the blocked part of the artery were removed and his kidney was then transplanted back into him. It was a success. He was the first pediatric patient at Children’s Hospital to have this surgery performed by Dr. Sander Florman, who is now at Mt. Sinai in New York. We received the best Christmas gift that year, for our child to have two working kidneys. Matthew is very fortunate to have received outstanding care from all of his physician's. We are very grateful to Dr. Diego Aviles and the nephrology dept. at Children's as well as Dr. Florman. Dr. Florman and Dr. Aviles agreed to attempt something, with no guarantees, to give Matthew the best chance for a good quality of life. True heroes to us.
In September of 2009, Matthew was again admitted to the hospital following a diagnosis of hydronephrosis. This meant there was a blockage due to scar tissue from his transplant surgery that was causing urine to back up into his kidney. Again, he had to undergo major abdominal surgery to remove scar tissue. He spent another 18 days in the hospital. It was during this time that I decided that something had to be done. Something good MUST come from all of the suffering that my child and my family has endured. I spent a lot of time researching and asking questions, only to get more and more frustrated that such a simple, non-invasive screening tool is not being used on a routine basis in every single pediatrician’s office, emergency room, or after hours clinic that treats children. I have had far too many parents tell me their children’s doctor doesn’t do regular blood pressure screening.
The NPBPAF was born in my mind during that last hospital stay. Through the extensive hard work of some of the most amazing people I know, the NPBPAF hit the ground running in early 2010. I knew that I could not let another child or family go through the excruciating pain we have.
We now know that Matthew was born with a condition known as mid aortic syndrome. He was diagnosed in 2014 by the Mid-Aortic Clinic at Boston Childrens Hospital. He has a 50% gradient narrowing of his mid aorta, which feeds the blood supply to his lower extremities, including his renal and urinary system. This is most likely the cause of the renal artery stenosis he was born with. We fully realize a blood pressure reading at least by the age of 3 would not change a congenital condition he was born with. However, if it would have been caught earlier he could have possibly had much less invasive intervention early on. The care could have also been provided in a non-emergent situation. In the case of renal artery stenosis and other renal conditions, sometimes the only sign there is a problem is with an elevated blood pressure reading. As is the case in several other critical conditions that can affect the heart or other organs.
Matthew will manage chronic kidney disease for the remainder of his life. He has learned very well how to balance his condition, how to take excellent care of his health, and how to help others. He has never questioned why this happened to him, he has only used all of this to try and make the world a better place for others. He is now a college student at the University of Louisiana-Monroe. He has aspirations to become a physician and continue to help children in their health disparities.
Hypertension crosses all boundaries. It can affect any child regardless of race, age, socioeconomic status, or gender. During the past several years of working with families, I have seen the impact of pediatric hypertension. I have also seen the positive influence of education on understanding what it means to be informed."