How did I end up here? Well, it wasn't by choice. It was by destiny. My life prior to March 2007 does not have much resemblance to what it is today. Who can ever truly know what there life will look like in 5, 10, or 15 years? No one. I think we all try to dream about the path we will be on but there is a much greater power in control of what really happens. At least that is my own personal feeling.
There is no parent I have ever met that would want anything ill to happen to their most precious gift, their child. Myself included. I remember being pregnant with Matthew and sobbing while I watched the St. Jude shows. I always pledged my support and my heart was ripped at the thought of what despair those parents faced with such sick children. Rubbing my belly I prayed that God would keep my unborn child healthy and safe until I could hold him. Feeling as though I could protect him from the world after he was born if I could just get him in my arms.
I guess this held true for 4 1/2 years until the time came that I felt more helpless than I had ever felt in my entire existence. Matthew's little life was a that of a typical little boy he lived in a growing family. We added his little brother, Conner, two years after Matthew was born. In 2007 we had just finished building our dream home, Matthew started preschool, and live seemed to be moving in the direction my husband and I had dreamt about since we said "I DO!"
March 2007 proved to be one of the most trying months. Matthew had been treated off and on for most of the winter with recurring ear infections and strep throat. It was decided that he should visit an ENT and have surgery. On March 28, 2007 Matthew left my husband and I as a child who would return forever changed. I have often wished I could rewind back to the 30 mins prior to surgery so I could look at the innocence of that sweet 4 year old's face. This is an innoncence he would never know again. Something so simple as a surgery to have tubes placed in his ears and to have his adenoids removed. It is done by the 1000's each day with minimal complications. However, this was not to be the case for Matthew.
He began to have severe vomiting 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 ER. 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. Hard to believe? Have you ever really given any thought as to whether all emergency departments take a child's blood pressure. There is an easy answer. No, not all ed's take bp in children unless they are over 12 or 13 or they come in as a trauma patient. (We are changing this!)
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 and we came very close to losing our baby. I can remember his dad and I standing at his bedside with 6 or 8 of the staff trying to get him to wake up. Pleading with anyone who would listen to my prayers to let my son keep fighting. Feeling helpless and not understanding how different my life was from a week earlier. Finally, his eyes opened and he was stabilized for transfer.
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 to 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 have 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 done 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 (National Pediatric Blood Pressure Awareness Foundation) was born in my mind during that last hospital stay and through the extensive hard work of some of the most amazing people I know the NPBPAF has become a reality. I knew that I could not let another child or family go through the excruciating pain we have.
I now know that Matthew was born with renal artery stenosis and that a blood pressure reading at least by the age of 3 would not change this. However, it would have been caught nearly a year and a half earlier than it was and he could have possibly had much less invasive intervention early on. The care could have also been provided in a non-emergent situation. He may not have needed to endure the auto transplant or the subsequent surgery to repair the scar tissue. 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.
There is a very simple solution to this national health care problem. Children need to have regular blood pressure screenings at every well child visit beginning at the age of 3 as is recommended by the American Academy of Pediatrics and the American Heart Association. It takes less than 60 seconds, it is non-invasive, and causes no pain to the child. There is no rational reason I can find why health care providers shouldn't do it.
Hypertension crosses all boundaries. It can affect any child regardless of race, age, or gender. This is not any obesity only issue. Please join us and help support the work of the NPBPAF and know that your kindness will potentially help save the lives of children across our nation. Remember, KYKN.....KNOW YOUR KID'S NUMBERS!
