Happy Valentine's Day. Heart Day. Lots of emotions. Today marks the end of CHD--Congenital Heart Defects--Awareness Week. I knew nothing of congenital heart defects before Levi was born. Nothing. I had no idea that 1 in 120 babies are born with a heart defect--40,000 babies a year in the US alone and 1 million worldwide, making it the most common type of birth defect. Public awareness is a critical step toward improving access to care, increasing scientific research and educational programs, and passing laws that will allow for crucial early diagnosis and treatment.
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| Levi - age 2.5 years |
Levi's diagnosis of critical aortic stenosis at two days old was a total surprise. We had a 20 week ultrasound and were told everything looked great and we were having a boy! We were so excited and I continued to have a smooth pregnancy. Then our world was turned upside down when the "innocent" murmur that was heard at birth turned into a life or death heart defect that needed intervention immediately in order for our baby to survive. Levi was airlifted in the middle of the night to another hospital and underwent an emergency balloon valvuloplasty to open his aortic valve. At one year old, Levi had open heart surgery to repair this same valve as well as an arotic aneurysm.
I was thrown into a medical world I knew nothing about and was forced to learn more about the heart and the care and the surgeries that my son will require for the rest of his life. I didn't know to ask not just about the four heart chambers during the fetal ultrasound, but also about the four heart valves and the flow of blood. Our son's diagnosis was missed. My son's heart defect could have been diagnosed before his birth. We could have prepared and chosen the hospital that could best meet the emergency needs of our son. Thankfully he survived!
Levi is doing well. Thank God. His heart will always be monitored and a source of concern for us. Most likely he will need future open heart surgeries and a valve replacement at some point. We don't know when. It's a waiting game from appointment to appointment.
CHD Awareness Week helps bring pediatric heart disease to the forefront to inspire those who can make a difference. Survival rates for children with complex heart defects have improved dramatically over the past few decades but early diagnosis and treatment can make the difference.
Levi's Frightening Illness
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| a late night in the ER |
Levi was scheduled for a routine cardiology appointment this morning. Unexpectedly, we had to move it up two days to rule our several possible scary infections that could have been wreaking havoc on his heart. Beginning eleven days ago, Levi started experiencing some bizarre and frightening symptoms. All of a sudden, after a totally normal morning, Levi started complaining about pain in his legs and in less than an hour, couldn't walk or bear weight. Over the next days this trouble walking came and went and was accompanied by a persistent fever, a hive-like looking rash, swelling of his feet, hands, knees, eyelids, lips that came and went, cough, oxygen sat was down to 91% at one point, and some odd swelling on his forehead. It was super scary and new symptoms seemed to crop up every day. What was happening to my baby?!
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| swelling |
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| horrible hives |
Levi is FINALLY on the mend and just has a little remaining rash and occasional stiffness or pain in his legs. We don't know for sure what's been causing this, but we've had one urgent care visit, one ER visit, five pediatrician appointments, consult by the one pediatrician with a rheumatologist, one set of chest x-rays (normal), three days of blood testing, and a urine sample! He continues to take antihistamines to help with the rash and ibuprofen and acetaminophen for pain as needed. But like I said, he's finally just about back to normal.
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| swollen hands |
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| waiting for more tests |
Levi's cardiologist also squeezed him in early for an echocardiogram and EKG on Tuesday morning. The best news is that whatever this is/was, it does NOT seem to be affecting his heart. We were so scared it was. In fact, Levi's heart looks as good as can be expected! His heart function has not changed much at all since his last cardiologist appointment in May 2012. He still has moderate aortic stenosis, but it has not progressed (mean pressure gradient of 28, peak gradient of 48). His aortic insufficiency (leakage) remains trivial, he still has mild left ventricular hypertrophy,
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| swollen forehead above right eye |
As far as Levi's blood work goes, two tests indicate he has increased inflammation in his body, but can't specify the cause. His latest blood work shows that these levels are decreasing though, so that's good. His other tests have looked normal so far and we're still waiting for one more set of results. After ruling out things like rheumatic fever, Kawasaki disease, endocarditis, and juvenile arthritis, it seems this may just be some strange allergic reaction to a virus that's just really thrown Levi's body for a loop. Ultimately, if symptoms such as joint swelling and fever return at a later time, then this may be a bigger issue, but for the time being we can't put an exact finger on it. Up until about three days ago, before the echo and blood work came back, I was a nervous wreck, so afraid that my sweet little boy might have to endure another freak diagnosis. He was such a sick little guy. I am SO incredibly thankful that he is finally is on the mend and appears to be almost back to normal!
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| just about back to normal! |
Other Heart Families
I was so excited and moved when I saw the cover story of our local newspaper this morning. Lindsey Bingham, a nine-year-old girl from Oregon, whose story I have been following, is finally receiving a heart today at Lucile Packard Children's Hospital at Stanford. After an 8 month wait in the hospital on a mechanical heart, this little girl is getting a second chance at life with a heart transplant that she so gravely needed. It's her Heart Day. Finally. Unbelievably, she is the second child in her family to receive a heart transplant. And while this is cause for great celebration, it also means that another family is grieving for the child they just lost. What an extraordinary gift of life and hope this family has given, even in the midst of their own unfathomable grief. Please pray for the donor family and for Lindsey as she begins a long road to recovery. As I read the Bingham blog this morning, it was hard not to get choked up. What an awesome time of medical advances that we live in. What an extraordinarily difficult road it can be for so many CHD children and families.
Just after reading about Lindsey's special heart day, the sad news came that a baby boy in Oregon, only a few weeks old and born with a heart defect and recovering from surgery, tragically passed away yesterday. I can't imagine that kind of loss and it happens all too often. Nearly one-third of birth defect-related deaths of infants are caused by congenital heart defects.
I am forever grateful for the doctors who worked on Levi's heart and gave him a chance for a better life.
So, Happy Heart Day. Hug the ones you love and hold them close.
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| all three munchkins at Christmas dinner |
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| Grandma with her grandsons (and the matching shirts she brought them :)) |
