through more than most in the last 48 hours.
For the last seven weeks, they were able to enjoy their perfectly healthy baby girl with friends
and family; doing everything you'd normally do with a newborn in the summer--going for walks
with their dogs, heading to the cabin, and celebrating every milestone she hit. She is the first
grandbaby and niece for the Bakers and Johnsons and has been showered with love since the
day she arrived.
Suddenly, things changed drastically changed from the idyllic start she had in life. Around 9:00
PM on Saturday, August 21, Elodie refused to nurse, which was very unusual for her. Kate knew
something was wrong right away. She and Collin packed Elodie up and headed to the nearest
ER. While the family was en route, Elodie developed some breathing problems. Upon arrival, she was transported via ambulance to Children’s Hospital in Minneapolis for further testing.
At Children’s, the family was greeted by a team of emergency medical physicians, nurses, and a
host of other medical providers. The team rushed Elodie to the ER where she received
emergent care and underwent a variety of diagnostic tests. When it became apparent that her
heart was unable to support her, Elodie was intubated and the cardiovascular critical care team
was rushed in to evaluate her. Once Elodie was stabilized and safe for transfer, she was
admitted to the cardiovascular critical care unit for additional testing. Over the next 36 hours
Elodie underwent multiple rounds of labs, several imaging studies, and a heart catheterization,
which showed Elodie has pediatric dilated cardiomyopathy.
Pediatric dilated cardiomyopathy is an incredibly rare condition affecting 36.5 out of 100,000
children, that is, an estimated incidence rate of 0.037 percent. The condition usually is caused
by (1) a severe infectious process that for some unknown reason attacks the muscle tissue in
the left ventricle of the heart or (2) a genetic abnormality that is undetected during pregnancy.
In this case, Elodie is one of the rarest patients to receive this diagnosis as she does not fall into
either category—her working diagnosis is dilated cardiomyopathy of unknown etiology. That
means that there is no bacterial or viral process that she was exposed to which her condition,
and that her parents do not appear to carry any of the known genetic chromosomes linked to
this diagnosis. What is most frustrating about her diagnosis is that her heart is structurally
perfect, meaning that it is built exactly the way it should be, but for some unexplainable reason,
the muscle in the left ventricle of her heart cannot squeeze or relax to push the blood to the
rest of her body, causing her heart to work very hard and ultimately fail. Like Elodie, most
babies who receive this diagnosis grow and mature while continuing to meet their milestones
until they reach an age or weight at which the heart can no longer meet the body’s needs.
The only shining light throughout this horrific tragedy is that—thanks to the attentiveness and
quick response of her parents—Elodie’s organs are completely intact with no structural
damage. Kate and Collin knew their baby girl so well that they were able to get her to the
hospital at the exact moment she needed care, preventing her from going into cardiac arrest
and saving her life. In short, Elodie is a perfectly healthy baby girl who was dealt a terrible hand.
Elodie is now facing the biggest battle of her life. She is intubated and on a heart medication
known as Milrinone which combats the symptoms of heart failure and helps her heart pump
while she waits for a new heart. Currently, there are 170 children in the United States waiting
for heart transplants, and only about 90 babies each year receive transplants. Due to the
encouraging advances in education regarding SIDs and technological advances in car seats and
cribs, babies are better supported and living longer, healthier lives. Although this is great news
for the general population, it is more challenging for infants, like Elodie, to match with a donor.
That being said, Elodie is an excellent candidate for heart transplant, and her parents remain
hopeful that she will receive a new heart within the next six to eight months. She is a healthy,
beautiful baby who would be able to live a normal life if she receives a transplant. Some of the
first infants to receive heart transplants over 30 years ago have now graduated from college,
gotten married, and gone on to have children of their own—and science is only continuing to
improve. Recent scientific studies suggest that infants with pediatric dilated cardiomyopathy
who receive heart transplants are continuing to enjoy even better outcomes.
From Kate, Collin & Elodie: We appreciate the outpouring of love, support, and prayers from
our village. We read everything you send us as a family. Your messages, prayers, and support
help us remain positive as we navigate this challenge and prepare for the long road ahead to
recovery. Knowing that Elodie is so loved brings us so much joy; and we have the highest hopes
that she will receive a new heart and enjoy a long, happy life.
We ask that you share Elodie's story far and wide—someone, somewhere may have a connection or know someone in the position to donate a heart. Awareness can mean so much!