Support Mia and Her New Robot Heart

My sister, Mia Crivello, will be undergoing open heart surgery on Monday, November 25th in Missoula, MT. This surgery comes 7 months after our mom died, making 2024 an eventful year for us. It’s also a big milestone for Mia’s own health journey. She has had two previous open heart surgeries and, this time, will be choosing a new path with a mechanical valve. It gets her out of the cycle of surgical intervention but will require more adaptation by her mind and body to her new normal. She has always been so graceful in responding to her health obstacles and in carrying the burdens she’s been given. She’s also getting better at letting others help in carrying the load with her. So I am asking our community to help support her (and me) as we get through this big event.

Some history:

In 2008, Mia was living in New York City just out of college. With no medical history of note, she was healthy and thriving in the city when she started experiencing severe flu-like symptoms with a high fever. After going to the hospital and being discharged without serious consideration of the source of her illness, she went back a second time and was eventually admitted. I happened to be making a scheduled visit (it was her 23rd birthday!) and so I became the designated family member to be with her at the hospital while she bounced back from this bug. The doctors determined that she had a bacterial infection and put her on an antibiotic IV. Her fevers remained and were so severe she would be shaking and sweating, even on the antibiotics. We were two young women in a hospital in Queens and didn’t know much about how to ask questions or advocate for ourselves. Several weeks in, Mia’s doctor did a (third) echocardiogram and finally found that the infection had turned into endocarditis, the bacteria accumulating in the leaflets of her heart’s mitral valve and damaging it beyond repair. Whether it could have been prevented, we’ll never know. But by that point, the only solution was open heart surgery to fully remove the damaged mitral valve.

Our parents flew out immediately and she underwent surgery. The doctors strongly recommended that she replace her mitral valve with a bioprosthetic pig valve. This option allowed for an unchanged quality of life but with the downside of needing to be replaced down the road. The option of a long-lasting mechanical valve was discussed briefly but was ruled out by the doctors, as it requires being on lifelong blood thinners and would have made it extremely difficult if Mia ever wanted to have kids. So Mia got the pig valve and went about the work of healing.

The next surgery was in 2016 and I again joined her at the hospital in New York City. In the 8 years since her previous surgery, we had grown much closer, partly because of our shared experience of caring for our mom. While open heart surgeries are totally mundane for the doctors who perform them, it’s an incredibly jarring experience both for the person who has the surgery and for the family members. The bones of the sternum are broken, the ribcage is opened like a butterfly, and the patient is put on a blood bypass machine which does the job of pumping blood to the brain and body while the heart is being operated on. There is something about this specific surgery – where the engine of life is paused for repairs – that leads to a particular eeriness during the surgery and upon recovery. The body is kept very cold during the surgery so the time immediately after in the ICU is very much like watching someone being brought back to life. It’s scary and miraculous at the same time. The person I’d most want to call and talk to about it is the one who is going through it. It is hard to weather the brief absence of someone so important to me. And that’s just my experience of it – I can’t even begin to describe Mia’s experience of the pain and the burden of facing repeated surgeries that most people her age can barely imagine.

The valve used in the second surgery came from a cow. We had hoped that medical advances might some day make it easier to replace this valve via transcatheter, without going through open-heart surgery. That would potentially allow Mia to avoid the need for a mechanical valve and the associated anticoagulant medication. In the years since that surgery, it’s become more clear that those advances won’t come in time. And every surgery puts some stress on the tissue of her heart – Mia’s aortic valve is now leaking as well so this surgery will involve the replacement of two valves. This has always been on the horizon for us and it’s been coming into focus in recent months that it needs to happen soon.

Mia has been listening to her body and has been advocating confidently for when her heart needs to be fixed again. She is ready to get off the surgery roller coaster and so, this time, she will be getting two mechanical valves and facing her new life on Coumadin. While the surgery itself is an unpleasant undertaking, her current underlying health concerns – fatigue, feeling short of breath – have made the decision easier. She knows it’s time and we all feel fortunate to have found an excellent surgeon and heart center so close to home. She is now an expert at navigating health care bureaucracy and we will both be much better at advocating for her needs.

In the summer of 2023, Mia and I did a sisters trip where we traveled to the West Coast and got tattoos. As part of this post, I’ve been given permission to share a picture of the tattoo that Mia got on her ribcage. It captures her journey of heart surgeries with characteristic charm and humor: the pig, the cow, and now the cute little robot.

While we’ve both grown, this will still be a huge undertaking: physically, emotionally, and financially. This has defined much of Mia’s adulthood and, with the mechanical valves, she’ll be facing lifelong medical care and the expenses that go with it. I know her community will want to help make this easier on her. We have set up a MealTrain and a FranklinTrain to take care of some creature comforts during the month or so while she is convalescing.

For people who aren’t local, we wanted to provide another way to help, which is this GoFundMe. Mia had already started dreaming of how to spend her upcoming 40th birthday in February. In addition to her insistence on a group trip to a roller skating rink, she is hoping to be recovered enough to spend some time in sunny Mexico City. Let’s keep her on her feet by helping to defray lost wages, cover out of pocket medical expenses, and send her an early “happy birthday” for a big milestone event.