Makenna and Her Transformed Heart: No Slowing Her Down
After three surgeries in four years, Makenna and her redesigned pump are ready for anything
Makenna Franks turns 5 this month. She'll probably start dance class soon. She noshes on Fritos twists, chases after her older brother and her boy cousins, and tries to climb trees the way they can in her suburban Houston neighborhood. Just a regular kid. But less than a year ago, she was on the operating table at Texas Children's Hospital for the third open-heart surgery of her four-year life.
Makenna was born with hypoplastic left heart syndrome, which affects about 1 in every 3,000 to 6,000 babies. In "hypoplasts," as doctors call these children, the left ventricle—the heart's main pumping chamber—and the aorta, which carries oxygenated blood to the body, stop developing before birth. Two of Makenna's heart valves also were defective.
Even as recently as the mid-'90s, most HLHS babies died. Gradually, however, a small group of surgeons has worked out a complex three-stage repair in which major vessels are rebuilt and rerouted to shift pumping chores to the right side of the heart. At Texas Children's, the death rate is now below 2 percent.
Makenna had the first stage as a 3-day-old infant and the second one at six months. Last August, Charles Fraser, chief of congenital heart surgery, performed the final step, which U.S. News chronicled in "Makenna's Heart" [September 3].
Recuperation wasn't fun. Her lymphatic system leaked fatty fluid into her lungs and around her heart, so Makenna was kept on a no-fat diet for six weeks after surgery. No Fritos. "Her big day was when she could finally eat those things," says pediatric cardiologist Michelle Grenier of Texas Children's, who has seen Makenna more than 10 times, most recently last month to run a battery of tests. "We want to watch these kids very, very closely," she says—measuring their blood oxygen, for example, to make sure their reworked hearts are pumping enough oxygenated blood.
The replumbed heart is working well, says Grenier. She pronounces her patient "just amazing—she knows she has a zipper on her chest, but she won't let it slow her down." Nor does Grenier think she should. "One of our concerns with our cardiovascular patients is that parents have a tendency to baby them, worry about them playing too hard, maybe feeding them a little too indulgently. Can she dance? Ride a bike? You bet."
Bobby and Brandi Franks aren't take-it-easy-sweetie parents. "We don't limit her," says Bobby. Nor do they assume that their daughter's life will now be perfectly normal. "Along the way I'm sure there will be bumps, and we'll do what needs to be done," says her father.
A recent study in the journal Circulation suggests that Makenna has a good shot at a smooth road. Researchers tracked every Children's Hospital Boston patient born prior to 1985 who had Makenna's type of surgery. Most, even those who had the procedure many years ago, were alive 20 and 25 years later.
"If Makenna came to me as a teenager and asked if she could run a marathon," says Grenier, "I would tell her she probably could—if she'd been doing as remarkably well as she has so far."
Reader Comments
grandson
My grandson has been diagnosed with HLHS at 20 weeks gestation, his due date is in April 2010. I don't know what kind of journey he will take, but I do know that I will be sending this website link to my son and daughter in law who live in Amarillo, TX. I thank you all for writing your stories and allowing me to share your joy and your pain on this path God has placed us. I weep that money determines our decisions of where, what kind and how our babies receive treatment.
One Very Proud Grammy
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.
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