It’s still hard for to comprehend that something is wrong with her. I say “still”, as if I’ve had more than 3 weeks to come to terms with it. I just can’t believe that there were no signs before, and we’re looking at less than 4 weeks between diagnosis and urgent corrective procedures. She seems so healthy. I find myself saying that so often, but it’s how I feel. How could something be wrong?
Let me explain.
I have two children. My firstborn and only son, J, will be 8 years old in exactly one month. My youngest and only daughter, L, is a week shy of 10 months old. Interestingly enough, I am thankful that L has gastroesophageal reflux disease (GERD). Because of this, she goes to her pediatrician (Dr. H) every month to have her Zantac prescription adjusted for her weight. Had it not been for this, she wouldn’t have seen him between May and November. She went to Dr. H in July and everything was fine. At her 9 month appointment on August 22, he heard a heart murmur.
He assured me that many children have innocent heart murmurs, but he wanted to send her to a pediatric cardiologist (Dr. K) just to get it checked out. Now, of course, as her mother, I worried. I Googled possible causes, diagnoses, statistics, prognoses. But overall, I was convinced that it couldn’t be anything to worry about, because she is so healthy. She is strong, smart, and growing like a weed. You wouldn’t look at her and think anything was wrong. She was born full term, naturally, at 38 weeks exactly. She weighed a healthy 7 pounds. Passed all her tests with flying colors. I’d had a few very minor complications with the pregnancy, but nothing that would hint that we would be facing something like this. My husband didn’t take off work for that initial appointment with Dr. K, because we were sure it was nothing to worry about. It just couldn’t be anything serious.
On August 30th, we went to see Dr. K. The CMA was having trouble getting vitals on my rambunctious little girl, so I couldn’t tell you what her blood pressure or pulse ox readings were that day. We had to call in reinforcements to complete the EKG, because she kept pulling the cords off. I was choked up already by this point, because of having to hold my daughter down and see her like that. But we got it over with, and waited. Dr. K came in and said the results of the EKG were normal (big relief). Then, she listened to my angel’s heart. She did the same thing Dr. H had done – listened to a few different spots while she was in my arms, and then asked me to lay her down to listen again. She said about 50% of children who have heart murmurs never have anything to worry about. However, she didn’t believe that L had an innocent murmur, there was something there, but she couldn’t diagnose it just by listening. She scheduled L for an echocardiogram on September 4th.
Daddy did take off work for the echo. However, he still didn’t believe anything was wrong. By this point, I was afraid. I spent the days leading up to the echo feeling sick to my stomach and not sleeping well. The night before, I was crying on my basement steps, worried and anxious beyond belief. Daddy was in complete denial, to the point of frustrating me. He said he couldn’t believe anything was wrong until he heard it from the doctor herself. I told him I needed him to be prepared, and for us to be able to listen carefully to the cardiologist, and not crumble. I needed him to help me be strong.
We went to the echo, and let me tell you – that was an EXPERIENCE. Keeping a squirmy, rowdy 9 month old still for an hour is no small task. They did get a pulse ox on her, and the highest they could get was 96 on her hand. Her toe read 82. If you know about oxygen levels, they should read right around 100 in a healthy child. Even 96 isn’t very good. They ended up giving her a sucker to calm her down about halfway through, she fell asleep, and they went back to get better pictures and then finished up.
At the beginning of the echo, the tech almost immediately asked me if I was going to see Dr. K that day. We were actually scheduled to see Dr. K two days later for the results. After everything was finished, she said for us to sit tight while she made sure everything was transmitted. She came back and said that she called and they actually had an opening so we could go talk to Dr. K about her results that day and to go on up (we were just a floor below her office). Turns out, Dr. K doesn’t normally do anything but paperwork on Wednesdays. She made time to discuss the results with us that day, because of what they saw.
She diagnosed my daughter with bicuspid aortic valve, and severe aortic valve stenosis. She also has hypertrophy on the left side of her heart, which is when the muscle thickens from pumping too hard and becomes less efficient. She said in many cases, she would monitor her until later down the road, but with her case being as severe as it is – and I will never forget what it felt like to hear this – they needed to intervene surgically, as soon as possible.
My husband broke down.
But she’s so healthy.
I listened carefully to every word she said as my world fell apart. I did not cry. I had to focus. She drew a picture of what it looks like, and explained how it affects her (which I will address in a future post), and overnighted L’s echo results to Riley Hospital in Indianapolis. She contacted the specialist I believe she said is taking L’s case, and he wanted to discuss it with a specific other doctor in the field before making a decision. Since her valve isn’t leaking yet, we may be able to do a heart cath and a balloon dilation valvuloplasty. This will put full-on open heart surgery off for a time, until she’s a little bigger and stronger, and her arteries are bigger. But, at some point in her life, she will have to have her aortic valve either replaced or repaired (if possible). It is just a matter of time.
Dr. K called me this past Monday (9/9) to say that the specialist hadn’t been able to show L’s echo results to his colleague yet, and she would hear from them Wednesday or Thursday. She also said that whatever they do, it will most likely be done next week, and if not, it will be the following week.
This is where we are now. Dr. K talked to Riley today, and we meet with her tomorrow at 1pm to discuss what they feel is best for my baby, and to set our appointments.
In the midst of all of this, my entire family is terrified – including L’s very protective older brother. He said he’s afraid it will hurt her, and afraid that she will “do the D-I-E thing.” He has been absolutely serious during all of our conversations. It is as if I’m talking to an adult. There is no child in his eyes on this subject. No light, no humor, no ignorance. Like Daddy and Mommy, he is her superhero, and none of us can protect her from this. We have attempted to ease his fears to the best of our abilities, but I can’t protect him from this pain, either…