A Quick Change of Plans
We returned to Iraq earlier this year after Elina’s second open heart surgery in Italy. Grateful for her astounding recovery from a sudden cardiac arrest taking place just days after the surgery we began preparing for the next stages of her care.
Just as we were settling back in, Elina’s health took a rapid downturn as we began to notice an increase in the symptoms of heart failure. The hope we had to travel with her to Boston for treatment quickly dissipated when her condition became severe, making long-distance travel unsafe.
Through the strong network of doctors we had connected with, we found a hospital in Italy with expertise tailored to Elina’s specific needs. Thankfully they were willing to accept Elina, re-evaluate her heart and attempt critical lifesaving care.
Surprising Results
Upon our arrival, Elina underwent a diagnostic catheterization that revealed her condition. It was far worse than expected. In the face of poor results, the medical team was astonished to see that Elina was still holding on, determined to fight.
Despite their low expectations, they began an aggressive medication regimen to see if her heart would respond. Over the next few months, a second catheterization showed dramatic improvements in the pressure in her heart – a surprising level of progress they did not expect to find.
Her surgeon even remarked “Elina is complicating our lives, but in a good way”, baffled by the improvement which allowed them to focus on even bigger challenges relating to other aspects of her heart.
Boston Pays a Visit to Italy!
As it stands, Boston is the world leader in pioneering caring for children with Single Ventricle. With this in mind, we made several inquiries along with substantial effort to send Elina’s medical reports from Italy to Boston, but were unsuccessful each time. This was important to us so that Boston could provide valuable input.
During a routine meeting with Elina’s surgeon, we were asked out of the blue if we wanted them to request a visit from Boston’s head surgeon to see Elina. We thought it was a joke at first, but it turned out to be true – Boston’s head surgeon was already on his way to Italy and would be available upon request to see Elina. We of course said yes-please.
He agreed and to our amazement visited Elina in person after evaluating her medical records. Taking notice of the improvement she had already made, he described her as a miracle and a fighter.
He then proposed intermediate steps for the Italian team to take, which would address key issues that need to be resolved before a full heart repair could be considered. This confirmed what we were hoping for all along. The goal of a full repair was back on the table and a successful repair would be the best possible outcome in contrast to other palliative options.
Setting Our Goals High
This week, the medical team took the first step by replacing Elina’s pacemaker. Now, we are waiting to see how her heart’s right side responds to this change.
Our ultimate hope is to bring her to Boston for a full repair. The procedure pioneered there, called complex biventricular repair, would be life-changing for Elina.
We know it will take many more miracles. Her life is already a testament to the extraordinary, and we believe there will be many more victories to come.