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Heal Eloise's Heart

$30,530 of $30,000 goal

Raised by 244 people in 2 months
Created November 26, 2017
The Big Picture

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.


The Treatment

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.

The Cost

Hospital Costs: $16,000  
Continuing Care: $4,800  
Lodging: $8,000  
Airfare: $3,300  

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.  

Share: Please forward this to your network and help get the word out about Eloise!

Thank you

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.

Love,

Megan

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Dear friends,

Just a quick note to give you the details about Eloise's memorial service. It will be held at 1PM next Saturday, December 30, at Bethesda United Methodist Church:

8300 Old Georgetown Road
Bethesda, MD 20814

You've all been amazing this past month. Whether you loved Eloise in life or have come to know her through this campaign, you are welcome at the service.

I hope you and your loved ones are well this holiday season. If you're struggling too, know that we're with you.

Love,
Megan
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Dear friends,

We've been overwhelmed by the outpouring of support from you all these past few days. So, most importantly, I want to say thank you. I also want to give an update about our plans for the GoFundMe now that Eloise is no longer with us.

Mia and Steve are still facing two months of lost income and a stack of medical bills, as well as funeral costs, so we're keeping the fund open. However, if we receive more donations than is needed to cover these expenses, Mia and Steve are going to donate the remainder to Compassion International.

There's a reason for that.

Before her surgery, Eloise was chosen by Make a Wish. The deal with Make a Wish, as I'm sure you know, is that kids get to make a wish—any wish—and then the foundation tries to make it happen. Some kids choose a trip to Disney World, or the chance to meet their idol, or swimming with dolphins (that'd be my choice), but Eloise didn't want that.

She wanted to fly to Uganda to meet the little girl, Ssuubi, who she sponsored (with mom and dad's help) through Compassion International. Eloise was worried that Ssuubi looked unhappy in her photos, and that maybe she didn't have enough to eat.

The Make a Wish representative kept pressing Eloise to make sure she understood what she was asking: Do you know where Ssuubi lives? Is it close to home or far away? How would you get there?

Eloise didn't understand why the lady kept asking her, but she patiently answered: Uganda, far away, airplane!

Finally, Make a Wish said they'd try to grant Eloise's wish.

You all know by now that's not the way things turned out. But Mia and Steve would like to try and honor Eloise's wish, if they can, by bolstering support for Ssuubi and other kids like her.

I think the reason Eloise cared more about meeting Ssuubi than she did about doing something 'fun' (and believe me, this was a kid who was always sniffing out candy and treats like a determined little truffle pig) was because she intrinsically understood the gravity of her situation, and of Ssuubi's situation. Eloise knew suffering.

She loved anyone who she perceived as fragile. That's why she always wanted to hold babies (which made for endearingly awkward encounters with strangers in public) and spent her recess at kindergarten sitting in the grass, picking clovers to give her class's guinea pigs.

Eloise used to call Ssuubi her cousin, and she really believed that. I always thought that was cute. Now I think she knew something we didn't.

Love,
Megan



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Dear friends and loved ones,

This is a terribly painful update to have to write. As you know, on Wednesday Eloise's heart failed, but doctors were able to revive her and maintain her on life support. She seemed to be stable, but overnight, while sleeping, she had a massive stroke. When doctors did a CT scan, they found that she had suffered a "diffuse" brain injury. It was inoperable, and she could not survive. There was no longer any brain activity.

One of Eloise's strengths was that she was a really good sharer. Mia and Steve knew that about her, and they decided it would have made her happy to save other sick little kids, if she could, by giving them her organs. So they told the medical staff they wanted to donate whatever was salvageable. As it turns out, the only part of Eloise's body that was still healthy was her liver—so that's what they decided to give. When Mia and Steve told Clara about the idea, she got really excited, saying, "It'll be Eloise's last superhero move!"

For the past few days, Eloise remained on life support while the donor team looked for a recipient. It gave us the gift of a few extra days to sit with her and say goodbye. Clara got to visit her. She drew pictures of Eloise's spirit, lay in bed with her, and sang to her.

Today, it was finally time to let Eloise go. My mom, aunt and I kissed her and told her how proud we were of her, and how much we loved her. Then we took Clara out for a beautiful day of chocolate chip pancakes and a long trip to the playground, which gave Mia and Steve a chance to take their time saying goodbye to their littlest one.

The truth is, Eloise was never going to leave the hospital as a healthy kid, as we had so hoped. The longer she was in the CICU, the harder things got for her. She was going to face yet another open heart surgery in the coming days, and then many more after that. She was going to be on dialysis, on a pacemaker, on blood thinners—which would mean any bump to the head could be fatal. No more carefree trips to the playground for her. She would have hated it.

One day before Eloise's surgery, my mom asked her how she was feeling about everything. "It's kind of a big scary deal, huh?"

But Eloise shook her head and grinned. "No Mimi, I'm excited, because it's going to be my last heart surgery!"

When Mia and Steve decided to do the surgery at Stanford, that's what they wanted for Eloise: one last surgery that would finally give their baby a shot at the life she so deserved. As time went on it became gruesomely clear that was not going to be Eloise's story. They were dreading telling Eloise about her future.

But as it turns out, Eloise was right. This was her very last operation.

We love our Eloise and will never, ever, ever forget her. This will never be easy. But she's free now. No more pain, no more knives, no more machines and tubes and shots and gloved hands holding her down and forcing things down her throat, in her chest, in her veins. She stayed with us for as long as she could, and then it was time to go.

Thank you all for your love and support.
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Hi all,

Quick update: Eloise is stable on the heart/lung machine, and we'll be speaking with her surgeon soon. It's likely that the problem is being caused by leakage around the mitral valve.

Long story short, she will likely need another open heart surgery in the coming days or weeks. We don't know the timing yet but will update once we know more.

Thank you for supporting our little warrior.
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$30,530 of $30,000 goal

Raised by 244 people in 2 months
Created November 26, 2017
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