So, our story begins almost four years and a half years ago, when we welcomed our beautiful 9 lb, 14 oz daughter on March 16th, 2010. That day would forever change our lives for the better! Cole handed our baby girl, Kylee Graham, to me when I woke up in the recovery room. It was probably much longer than I remember through the haze of anesthesia but it felt like only a couple of minutes of time with my precious daughter when the nurse stepped in. She informed us that Kylee was not able to stabilize her own blood sugar and that she had to go to the Neonatal Intensive Care Unit (NICU) immediately. A few days later, Cole, along with a nurse, escorted Kylee through Norfolk General to CHKD to see a cardiologist for concerns about her flow rate. Many children are born with a small hole in their heart that typically closes, but Kylee's was not closing. She also had a severe heart murmur which can be quite common but then they diagnosed her with Aortic Stenosis. As you can imagine, Cole and I were in utter disbelief.
This condition is defined as follows:
Aortic valve stenosis — or aortic stenosis — occurs when the heart's aortic valve narrows. This narrowing prevents the valve from opening fully, which obstructs blood flow from your heart into your aorta and onward to the rest of your body.
When the aortic valve is obstructed, your heart needs to work harder to pump blood to your body. Eventually, this extra work limits the amount of blood it can pump and may weaken your heart muscle, leading to symptoms, such as fatigue and dizziness (and eventually worse, depending on the level of obstruction.)
If you have severe aortic valve stenosis, you'll usually need surgery to replace the valve. Left untreated, aortic valve stenosis can lead to serious heart problems and worse. Please go to the following hyperlink to learn more about this debilitating and potentially deadly condition. http://emedicine.medscape.com/article/150638-overview#aw2aab6b2b6aa
So before leaving the leaving the NICU at Children's Hospital of the King's Daughter's (CHKD) a week after she was born, we were told we would need to follow up with Kylee's cardiologist every six months. To say the least, the fact that my week old daughter had a cardiologist was terrifying.
Fast forward to April 2014. Cole and I took Kylee for her 6 month check up and they informed us that they found a secondary condition called a Subaortic Membrane which is a fibrous membrane below the aortic valve that may involve the ventricular septum, the anterior leaflet of the mitral valve, and the aortic valve itself.
At this point we agree to come back for a check-up, after 3 agonizingly long months because there is no physical symptoms that would warn us that the condition is getting worse without doing an echocardiogram. Wednesday, August 13th, 2014, at our last appointment, the doctor explained that she also has a minimal back bleed. The bottom line is that our baby girl's condition is rapidly getting worse. Kylee's Cardiologist met with the Board of Surgeons at CHKD and they all agreed it's time for surgery. (Did I mention that this condition is rare in children and cannot be done at most hospitals?) So it's time for us to set a surgery date and it looks like we will be bringing Kylee Graham from her home here in Virginia Beach, VA to Boston Children's Hospital in MA.
We desperately need financial help to make this happen! Please donate to this "Caring for Kylee" Fund to help get her there and get this surgery completed by the best pediatric cardiac surgeons on the planet. Thank you all so much for doing what you can. Our gratitude is impossible to put into words. God Bless.
All the best,
Cole, Jen and Kylee
(Author's note: Any and all donations will go to directly to hospital bills and follow up care for Kylee. Any additional funds will be donated directly to the Children's Hospital of the King's Daughter's NICU and the Pediatric Cardiac Unit at Boston Children's Hospital.)