Makenna and Her Transformed Heart: No Slowing Her Down
After three surgeries in four years, Makenna and her redesigned pump are ready for anything
Reader Comments
hELLO
mY SON BRANDON T.WAGA, WAS BORN WITH HLHS, IN 2000. THANKS TO KOSAIR'S CHILDREN HOSPTIAL, LOUISVILLE, KENTUCKY, AND BY THE HANDS OF SURGEON DR. AUSTIN, MY SON IS DOING WELL. IS NOT BEING EASY FOR THE WHOLE FAMILY BUT HE IS STRONG FIGHTER, AND THAT MAKE US MORE STRONGER. HE IS NOT ONLY HLHS BUT HE IS ALSO HDHD, AND HE JUST RECENTLY DEVELOPED GASTRITIS EOSHENOPHILIA, AND PLE. HOPEFULLY DOCTORS CAN RESOLVED THESE OTHER ISSUES. WE JUST RECENTLY MOVE TO COLORADO, AND THE ALTITUD IS AFFECTING HIM, A LITTLE BIT.
CARMEN WAGA
HLHS
MY LITTLE ONE HAS HLHS HE HAS HAD THE FIRST AND SECOND STAGE OF HIS HEART SURGERIES, HE IS COMING UP ON HIS THIRD AND I JUST HOPE THAT THEY WILL GO SMOOTHER THAN THE FIRST TWO. WE HAVE HAD MANY TRIALS WITH TAYT'S FIRST TWO, AND HE JUST HAD A CHECK UP ECHO THAT SHOWED THIS RIGHT VENTRICAL IS STARTING TO SHORTEN OUT, WE ARE NOW GETTING READY TO DO HIS THIRD AND ARE HOPING FOR THE BEST, I'M HONESTLY NOT READY TO DEAL WITH A HEART TRANSPLANT IF THAT IS WHAT IS COMES TO. I'M SO GRATEFUL THAT THERE ARE OTHER PARENTS THAT HAVE BEEN AND ARE IN MY SHOES, IT DOENS'T MAKE ME FEEL SO ALONE AND THEY CAN HONESTLY SAY THEY KNOW WHAT YOU ARE GOING THROUGH.
MaKenna's parents
I know Makenna's parents, I used to teach with her mom. They are amazing people. If I had to pick two people to insure Makenna's progress was on the right path, it would be them. As wonderful as Makenna is...her parents are even more so. There is no doubt that Makenna will be anything she wants to be...and eating Fritos while doing it!
HLHS
I am so happy to hear that your daughter is doing well. I am 23 weeks pregnant and we were told that our daughter has HLHS, at first we were pretty much told that there isn't anything that can be done for her. So we went to Boston Children's Hopsital and the doctor's there really gave us hope that everything will go okay and that our baby will live a long and prosperous life, they explained what the defect was and how they were going to treat it and the prognosis of the three surgeries. With this being our first baby and not knowing anyhting about the defect we were heart broken, it is definatley nice to know that even back when the first surgeries were being done that there are surviors. Going to Boston Children's Hospital was the best thing that we could have done, I feel so much more comfortable now knowing that our daughter will be in good hands. I just pray that she has as good an outcome as McKenna has..
Good Luck with everything and God bless.
Heart surgeries
Love the article on Makenna, this story brings light to the the plight we have about getting the word out on heart issues and transplants. My son who is now 19 years old had his first open surgery at 2 1/2 weeks old, when he was born we were told to take him home and love him that he would be dead within 24 hours. He was born with Aortic Stenosis with possible HLHS. We did not listen to the doctors and found one who could do the surgery that might save him and this doctor had only done the surgery one other time and the child was still alive, so we had a chance. But again we were told he would need surgery every year to keep him alive.
He never needed another surgery again until he was 12 years old when he had the Ross procedure to replace his valves. This was to last 10 years and unfortunately it only lasted one year and he was put on the transplant list. With in the year he recieved his new heart and well is history. He is very healthy and is getting ready to graduate college. So there is always great hope and I am sure MaKenna will go on and have a great future.
Yes, we still understand that he could reject at anytime but that is not a worry as we feel he has a long life ahead of him and he is already looking into the future as to where is he will live and work but so far he has no plans to marry or does he want kids, he is still young yet
17 year old HLHS survivor
I'm gratified to hear that Texas Children's is having such great success with these operations these days. When my son was born with HLHS in Texas 1991, the only option was to transport him all the way across the country by air ambulance to Dr. Norwood himself at the Children's Hospital of Philadelphia (the first stage HLHS operation, the "Norwood Procedure" still bears his name). All three of my son's open heart operations were over by the time he was 13 months old (they wait a bit longer now), and he spent only 7 or 8 days in the hospital after each operation. He was fortunate to never have any effusions (fluid problems).
My son is now 17, is well, and is looking forward to graduating from high school next year and going on to college. There are 125+ stories written by families of HLHS survivors at http://tchin.org/portraits/by_diagnosis.htm#hlhs .
HLHS survivors
Thank you for sharing Makenna's story. In our organization, we have 350+ HLHS survivors - the oldest being 22 years old. We have a group photo taken at our 11th annual picnic of 45 HLHS kids which you can see by going to the PICNIC page of www.littlehearts.org. My son, Jeffrey, will be turning 12 years this June and is in the 6th grade and doing very good.
