My niece Eloise is only 6 years old, but she has already endured four open heart surgeries.
The reason? She was born with a severe heart defect called Tetralogy of Fallot with pulmonary atresia.
She has a hole in the wall that separates her lower right and left heart chambers. There is no pulmonary valve at all to connect the right ventricle to the lungs, and blood has to reach her lungs through other, smaller arteries.
Those structural defects make it impossible for Eloise’s heart to pump blood the way it is supposed to. Kids with this heart condition can’t survive without major intervention—and that’s why she has had so many surgeries.
Last year, Eloise’s treatment team concluded that her heart was too damaged to repair further.
They told us she would likely die in her 20s.
But we were also told there was one surgeon at Stanford, Dr. Frank Hanley, who could possibly help her. After reviewing her records and consulting with her cardiologist here in DC, he agreed to operate.
On November 10, Eloise had her fourth open heart surgery. The procedure was successful in crucial ways, but it also took a huge toll on her.
She is now on 24/7 dialysis and can’t breathe on her own. She has also developed a serious infection.
The bottom line is, Eloise is very ill, and will be for a long time. Her mom and dad, Mia and Steve, have been out of work for over a month.
They're now facing another two months before she can be released from the hospital.
Once they’re back home in Maryland, she will still need extensive care. She may be on dialysis for a full year, which will necessitate constant hospital visits.
It’s unclear how Mia will be able to work and take care of Eloise at the same time.
It’s breaking my heart to watch them all struggle, and while I know they will do whatever it takes to save Eloise, I don’t want them to lose their home or go into crippling debt in order to get her the care she needs.
That’s why I’m asking for your help.
There are many worthy causes to support and people who need help in this world, and I know our story is one of many. All the same, if you’re moved to support Eloise and her family, please consider donating.
Below you’ll find the details of Eloise’s health journey, as well as a breakdown of costs.
Thank you from the bottom of my heart.
The Back Story
When my sister Mia was 13 weeks pregnant with twins, she and her husband, Steve, went for a routine sonogram. The sonogram tech stopped suddenly in the middle of the procedure and said she was going to get a doctor. Mia began praying.
What the tech saw was a marker of genetic abnormality. It turned out to be Tetralogy of Fallot.
When Mia was 35 weeks pregnant, a high-risk specialist informed her that the baby with the heart condition had stopped growing. Eloise and Clara were born by C-section the next morning.
Within a few minutes, Eloise began to struggle.
Doctors quickly intubated her, put her in a closed incubator, and rushed her to Children’s. For the next few weeks, Eloise was in the Cardiac Intensive Care Unit.
When she was 5 weeks old, she began to turn gray. Her heart couldn't provide enough oxygen to her body. She needed immediate surgery. Thankfully, it went well, and Mia and Steve finally got to take their daughters home when they were 2 months old.
When Eloise was 5 months old, her doctor said there was still too much obstruction of blood flow from Eloise’s heart to her pulmonary arteries, and she needed a second open-heart surgery.
Afterwards, Eloise's medical records read, “Tetralogy of Fallot, repaired.”
Naively, we all thought that meant Eloise’s heart was fixed.
But the pulmonary arteries to her left lung were still too small, and over the next two years she had several catheter procedures, in which they went up through a vein in her groin to use tiny balloons and stents to expand her arteries.
When Eloise was 3 years old, the catheter doctor said he was not able to expand the pulmonary artery enough, and she would need another open-heart surgery.
Again, Eloise recovered.
Then we got truly devastating news.
In the fall of 2016, when Eloise was 5, her doctor said the pressures in Eloise’s heart were too high and the right ventricle was severely dilated. Another catheter procedure was scheduled for January, 2017 with two goals: to close holes between her two atrial chambers and expand her left pulmonary arteries.
After the procedure, the catheter doctor said the membrane was in worse shape than anyone had realized, and he’d had to place an extra-large patch (called an Amplatzer device) to close the holes.
He also said that he could not find any arteries to connect to the lower two-thirds of her left lung. This meant that Eloise’s left lung was only getting about 10% of normal blood flow from the heart.
Pressure would continue to back up into her heart, leading to continued damage.
The treatment team said there was nothing further they could do to stop her heart from deteriorating.
She would likely die in her twenties.
A Glimmer of Hope
Then Mia and Steve learned about a surgeon at Stanford University, Dr. Frank Hanley ,who does complex surgeries to reconstruct pulmonary arteries.
It was a tough decision, because there would be risks involved. But in the end, Mia and Steve were unwilling to accept the idea of Eloise not having a full life without trying to do whatever they could to help her.
This would be their last-ditch effort to give Eloise a shot at a normal—or close to normal—life.
On November 4, Mia and Steve flew to California with Eloise and Clara. The surgery was scheduled on November 10, and they were told recovery would take less than two weeks.
The surgery took 14 hours.
Dr. Hanley was able to expand and reconstruct most of the arteries to Eloise’s left lung, and he placed a valve at the opening from her heart to her pulmonary arteries.
But there were major complications.
Blood was leaking around the Amplatzer device between the two atrial chambers, so he removed the Amplatzer and sewed a patch that completely sealed the holes in the membrane. He then closed Eloise’s heart and took her off the heart/lung bypass machine.
When he did an echocardiogram, he saw that another valve, the mitral valve, was not functioning properly. It turned out that the mitral valve was extremely damaged, but no one had noticed because the Amplatzer device had been covering it.
In fact, the mitral valve had come almost completely detached from her heart tissue, meaning Eloise could have bled out at any moment.
It was clearer now than ever that she had truly needed the surgery.
So Dr. Hanley put Eloise back on heart/lung bypass, reopened her heart, and repaired the mitral valve. Still, he believed that the surgery was successful and would prolong her life.
This was good news.
But Eloise’s has not been recovering like we hoped.
During the surgery, Eloise’s left lung suffered extensive damage from suddenly being inundated with blood after years of only receiving 10% blood flow.
The next morning, because her heart and lungs were not functioning well, they had to reopen her chest to allow more room for swelling.
Mia and Steve could actually see Eloise’s heart beating.
For the next week, the doctors in the Cardiovascular Intensive Care Unit struggled to get Eloise’s heart to function properly. Pressures were too high and the different chambers of her heart were not beating in rhythm. At times her pulse would increase to 180 beats/minute.
Throughout this time, Eloise was maintained on a ventilator and kept deeply sedated.
Then her kidneys stopped functioning, and she had to be placed on 24/7 dialysis.
Then she developed an infection that started affected the functioning of multiple organs.
It’s still not under control.
Eloise continues to have a high fever, and she remains on 24/7 ventilation and dialysis.
Mia and Steve are hopeful that Eloise will make a full recovery and have a better and longer life. However, they have been told to expect that she will be in the hospital for at least another month or two.
When they return home, Eloise will likely be on a pacemaker and need dialysis for up to a year.
Hospital Costs: $16,000
Continuing Care: $4,800
Lost income: Mia and Steve have been out of work for over a month, and may not be able to return to their jobs for two more months.
Because they’re not bringing in any income and are facing over $32,000 in expenses (this is a conservative estimate), the GoFundMe goal is currently set at $30,000. Of course, any help at all will make a huge difference.
Other Ways to Help
Frequent Flyer Miles: If donating money is not an option but you’d still like to help, frequent flyer miles would be extremely helpful.
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I want to thank you for the compassion you’ve shown just by reading this. My family is overwhelmed and afraid right now, but the care we’ve felt from friends, family, colleagues, and even complete strangers has given us strength. Whether or not you realize it, you are helping.