Makenna and Her Transformed Heart: No Slowing Her Down

insurance

Hello all

I am 29 weeks pregnant and my baby boy has HLHS. Unfortunately, the best doctor near us isn't in our GHI network coverage. Does anyone know of additional coverage that we could pay a reasonable price for? We live on Long Island, NY. We do have the option of another doctor that is within our coverage but I don't know if he is as good as Dr. Jan Quaguebeur at Morgan Stanely Children's Hospital. Does anyone know Dr. David Meyer at Schneider's Children's Hospital in New Hyde Park, NY? I hate the fact that I even have to think about this. I wish I could just focus on the actual defect. Thank you all for listening. Best health to you and your loved ones.

HLHS then transplant

My grandson, Maddox was born on February 6, 2007 with HLHS.

At the young age of 3 weeks, the 1st phase of treatment was performed in Oklahoma City, where Maddox was born. After a few “medical mishaps” and upon extensive research of the illness, Maddox’s mom decided it was best if Maddox was treated by Dr. Charles D. Frasier, Jr. at Texas Children’s Hospital in Houston.

Maddox was seen first seen by Dr. Frasier in November of 2007, and he agreed to perform the 2nd phase surgery on Maddox. The surgery eventually took place in March 2008 with no complications.

The 3rd phase surgery was to occur a few years later, when Maddox was 3 years old. However, due to the onset of severe heart failure, it was decided that Maddox would need a new heart.

Maddox was placed on the National Transplant list on October 9th. On October 10th a family unknown to us, chose to bestow the selfless gift of life by making the decision to donate the organs of their 5 month old daughter. We are certain that Maddox had a Guardian Angel in the form of a 5 month old little girl.

On November 21st our hopes, prayers, and dreams turned into a living nightmare.

Maddox was taken to surgery for a routine heart cath. The biopsy was successfully taken from the donor heart. In spite of this, Maddox’s heart rate dropped and the teams of doctors were unable to resuscitate our angel.

Not a day goes by that I do not miss my sweet angel.

I have found slight comfort knowing that Maddox is no longer in pain, that no one will ever cause him another “owwee”, and that his little body will no longer sustain another scar. The trauma, pain, and suffering which Maddox incurred in his 21 months on earth are more than I will ever know in my lifetime.

I try to find the words to explain that Maddox was truly an Angel sent to us from God, however, I am at a loss for such words, though the signs of an Angel have become clearly evident to me. Maddox’s vocabulary included these words: “amen!”, “fly”, “up above”, and “amor” (which means love in Spanish). These words were not stressed to Maddox, they were simply used in conversation at one time and he clearly remembered the appropriate use. His medical history also reflects the same. We were told on three (3) different occasions that Maddox would not “make it through the night”, and he always proved the doctors wrong the next morning.

His returning to God left a hole in my heart which will never be filled; he will forever remain in our hearts and minds.

unborn baby girl

My husband and I are expecting a little girl in March 2009. She has been diagnosed with dextrocario, DORV/HLV, L-TGA and pulmonary stenosis. She will have three surgeries. The BT Shunt will be done during her first week of life. Glenn procedure at 6 months and Fontan at 2-3 years. We are praying and hoping for the best. She has been given 85% chance of a normal life. Reading about McKenna and the other comments really help me get through each day.

MY LITTLE ANGEL WITH HLHS

MY DAUGHTER WILL BE 9 ON MARCH 26,2009. SHE WAS DIAGNOSED WITH HLHS AT 5 DAYS OLD. SHE HAD HER NORWOOD AT 10 DAYS,HEMI FONTAN AT 6 MTHS, AND HER FONTAN AT 18 MTHS. HER SURGERIES WERE DONE IN ANN ARBOR,MICHIGAN,BY DR. EDWARD BOVE.HE IS THE DR. THAT PIONEERED THE HEMI FONTAN SURGERY AND SINCE THEN THESE STAGE OF SURGERIES HAVE BEEN MORE SUCCESSFUL.HE WORKED WITH DR. NORWOOD BEFORE GOING OUT ON HIS OWN.HE HAS DONE MORE OF THESE SURGERIES THAN ANY OTHER DR. I HIGHLY RECOMMEND HIM TO FIX UP YOUR LITTLE ONE IF YOUR LOOKING FOR A SURGEON. MY DAUGHTER IS VERY HEALTHY AND CAN KEEP UP WITH ANY CHILD HER AGE PHYSICALLY AND MENTALLY. I WAS READING ONE OF THE STORIES ABOUT A PARENT OR DR. LETTING A HLHS CHILD HAVE NO LIMITATIONS. YOU HAVE TO REMEMBER THESE KIDS HEARTS OVERWORK JUST TO LIVE SO THEY SHOULD BE LIMITED TO OVER DOING IT BECAUSE IF THEY WEAR THEIR HEART OUT THE ONLY THING LEFT IS A NEW HEART AND THERE NOT EASY TO FIND!!!! MY DAUGHTER TAKES 1 2.5 ENALAPRIL AND 1 BABY ASPIRIN A DAY.GOD HAS BLESSED HER WITH A SPECIAL GIFT OF MUSIC SO WE DONT HAVE TO WORRY ABOUT SPORTS. SHE HAS BEEN IN PIANO FOR 4 YEARS AND SINGS IN HER DADDYS COUNTRY BAND SINCE SHE WAS 5.

re: My 2nd unborn son

Reading the last comment brought me back one year ago. Our unborn daughter was diagnosed on October 12, 2007 with hypoplastic left heart syndrome too. She was due on Feb 22, 2008 and arrived a little early on Valentine's Day. We have survived 2 open heart surgeries and 2 heart caths. Her cardiologist tells us she is doing amazing! People are amazed when we tell them she has had 2 open heart surgeries. She isn't any different than any other 8 month olds (other than her "zipper"). I hope our story can offer some hope to you and others out there. We have a caringbridge site under nevaehw if you would like to read more.

My 2nd unborn son

My wife is pregnant with our second son. When we found out that we were pregnant in June, we were estatic. Then recently, we found out that it was a boy and were also told that he has HLHS. We are both very very scared and am hoping for a miracle tbat he is alright when he is born. We are both christians and believe that God can heal anyone. It would be great if that is the case but we both are also looking at the possibility of having to go through the 3 surgeries. We live in Charlotte NC and will be going to CMC and the Levine Children's hospital to have our surgeries. I don't know why this happened but all I know is that God has his plan for our Jake and he will be fine. It will be a long and very difficult journey for us which will test us as christians and also test our strength as a family. We are due 02/20/2009.

HLHS/ M.A./ A.A.

My daughter Adelle was born with HLHS. She had mitral atresia and aortic atresia. She also had a moderately restrictive atrial septal defect and a severely hypoplastic aortic arch. She was a superstar! Every day the doctors would come in they were amazed by how well she was doing. They called her the poster child for the Norwood Procedure. Unfortunately Adelle passed away very suddenly Oct. 18th, 2007 of unknown cause. She was 15 days old, 13 days post Norwood. They suspect she had a very significant arrhythmia. Even when HLHS children make it through a surgery and the critical 18 hours post-op successfully the hurdles aren't over. There is a 10% chance of sudden death following the Norwood Procedure (the first of 3 surgeries). My daughter was one of those 10%. We have come so far, but we have so far to go. One of the biggest steps we can make for our children is to do the research. We need to find a cause. If we can find a cause we can prevent so many families from ever having to go through this. I never thought my child would be sick, still now I can't believe how sick she was. All I can see is my perfect angel baby wrapping her little fingers around my knuckle and the two of us getting lost in each others eyes. That's all I ever want to see, she's my daughter after all and I would have done anything to give her every chance at a long happy life.

My 16 yr-old nephew

I should first note that although I live out on the east coast, the nephew I'm refering to here was born in, operated on, and still lives in Utah.

My nephew was born with HLHS in the summer of 1992. Back then the now-common "three stage" surgery was still considered more or less experiemental. Besides the "three stage" surgeries, he has had several other surgeries to do things like replace leaking valves. During several of his surgeries a doctor came out from the surgery to tell his parents they didn't think he would make it. The last time it took them something like half an hour of repeated attempts to get his heart going again.It's really scary for his parents, but they have continued to be blessed and he is still alive and (relatively) healthy. Even though he still has some limitations on what he can do - any kind of strenuous activity leaves him winded - he's otherwise quite normal. To be honest, I suspect there are a lot of parents with "healthy" couch potatoes who are less physically active than my nephew. We just continue to hope for the best for him and his family contiues to plan with the expectation that he will be around for a long time.

HRHS

My little Miranda had the HRHS. She had two surgeries aldready. She is going to have heart catherization in september because her oxygen saturation is low. I am very wory about her every time she is trying to catch her breath. Thank you to Dr. Charles Fraiser and the staffs of Texas children Hospital.

HLHS is still very serious, even with the high success rate for surgeries

My first son, Kenneth, was born with HLHS. Unfortunately, his subset (mitral stenosis, aortic atresia) created some additional deformities in his heart that weren't discovered until his first open-heart. He passed away 1 month and 3 days after his birth.

It is my fervent prayer that the surgeons and researchers will continue to pioneer new and better methods of helping our HLHS kiddos, so that no other parent has to bury their child because of this awful defect.