By the time she had the choking scare, she had already had pneumonia a couple times. After she choked, she developed pneumonia again, and, being in Wisconsin for the summer, I took her to the Pediatric Pulmonologist at UW Madison. She had also been diagnosed at birth with a wheeze (stridor) that was considered laryngeomalacia, a floppy voicebox that she would outgrow before the age of 2. She was still sounding wheezy at 2.5 and also seemed to get a lot of crud that would settle into her lungs, which would develop into pneumonia. The specialist at UW listened to my concerns, thought of a couple possible, but highly unlikely conditions that he didn’t recommend follow-up with when we got home, and concluded that the most likely diagnosis was a random cluster of illness. He actually wrote a letter to our home pediatrician that he was fairly convinced she was just “unlucky”. So, with paper in hand, and filed at her doctor, the conclusion was just plain bad luck (Is that a pre-existing condition? Bad luck? Can you get health insurance for it?).
When we got back home after the summer, her pediatrician was no longer concerned because a specialist (who hadn’t run any tests) didn’t think she had anything wrong with her. That winter landed her in the hospital again with pneumonia. (In all, she has gotten pneumonia over 8 times before the age of 7, and hospitalized with RSV twice at the age of 3 and 7). Once particular time, her older brother had gotten a really bad cold, complete with several days of fever. Usually I let it run its course, but I finally took him in. They tested for the flu and he tested negative. When she got the same virus several days later, I knew what to expect, and there wasn’t much that could be done. We were riding it out, but around day 4, I looked at her and remarked that her lips looked a bit blue. When we took her to the doctor that day, we found her oxygen sats were around 64%. Headed to the hospital immediately! She unfortunately had a viral pneumonia, so we couldn’t do much except monitor and oxygenate. She was in the hospital for several days. That was the scariest time, sitting, waiting, hoping.
By this time I was becoming frustrated. Each time she was sick, I would remark to the doctors or nurses that it seemed strange. At first they listened, but decided that since she had already been checked out, maybe she just got all the bad bugs! I was still nursing her at the time, and aside from frequent pneumonia, she was a very healthy child. I would tell them I was still nursing, even at the age of 2 and 3, but they figured she just got sick a lot.
During her hospital stays, I would sleep with her in the hospital bed, nursing constantly. The doctors ignored this, but the nurses were so encouraging. Just keep nursing her! It’s got to help! When I would express my concern, I was mainly brushed off by docs, but the nurses would pull me aside and tell me they thought the same thing, maybe something else is going on. She shouldn’t be this sick.
Finally, one night, one of our regular docs came to check on her doing his rounds. I voiced my suspicions to him again. I had said (for the hundredth time), I just feel like something in her throat is constricting, and when she gets sick, she can’t clear her lungs and it just settle and gets infected. I’m just sure of it! This doctor listened, but didn’t agree with me. When he left, I felt crushed. I cried. I prayed. I decided I needed to stop being a hypochondriac for my kids. I was embarrassing myself trying to play detective and medical doctor and I only had a weird hunch. I had to let this go. I had to stop bringing this up. I didn’t want to look stupid anymore. The next morning, the doctor came back in. He sat down and said, “I’ve been thinking. I don’t think there’s anything wrong with her, but I guess if this were my kid, I’d be a little curious. I don’t recommend seeing a specialist, but if you want a referral, I will give you one.”
When she recovered (by this time she was around the age of 3), I followed up and got a referral. Before we went, I researched her symptoms on my own. I found what I was looking for immediately. She had hallmark symptoms of a condition called tracheomalacia, a constricted trachea. She had every symptom, including misdiagnosis, unexplained pneumonias, and failure to diagnose. It’s usually caused by one of 3 things. All I had to do was convince the specialists that this was what she had. I was gunshy from the last specialist we saw, who did nothing but patronize me.
When I took her, they listened to her story and immediately said it sounds like tracheomalacia. It’s one of 3 conditions, but let’s start with a bronchoscopy. She had one, sedated, soon after. The specialists were excited to find that indeed, at the bottom of her trachea, it became constricted. This eliminated a couple reasons for her condition. The most likely was called a vascular ring, a tight band of heart tissue that squeezes the trachea. It’s extremely rare. They scheduled her for a CT scan to confirm the diagnosis. I was so happy to be getting somewhere! She had her CT scan. That day, her doctor who had scheduled it got called out to an emergency and another doc took over. Several weeks later, we got the call. The CT scan was read, and good news(?), no vascular ring was found. This was pretty disappointing, as we were back to square one. They told us over the phone that since it wasn’t that, they weren’t sure what it was, and hopefully she just wouldn’t get sick anymore. It was late summer by then, and thankfully she typically didn’t get sick in the summers.
That winter she was hospitalized 2 more times. What was going on? It seemed like there was just nothing behind what was causing her illness except perhaps she was just sickly. I decided to call the specialists again and just report that she hadn’t outgrown anything, hoping they could offer other ideas. Her dad even warned me to drop it, we’d already scanned for everything. They were as alarmed as I was that she was still getting sick. They saw her again, puzzling over the pneumonias. Then, someone thought to read the CT scan again. They came back into our exam room. Sure enough, plain as day, a vascular ring, encircling her trachea, collapsing it. A few days later, we received a personal heartfelt apology from one of the docs that was involved in running the scan. He felt terrible it had been missed and laid awake some nights thinking that she could have died because they missed it. That meant everything to us. Humans make mistakes. Sometimes deadly ones. The people it’s hard to forgive are the ones that don’t admit to mistakes.
She had heart surgery a few weeks later as this was a fairly dangerous condition (obviously if she were to get sick again and not kick it), but it’s not something that a child outgrows. In fact, the opposite. As she grows, and her trachea grows, and everything else gets bigger, this little band of heart tissue does not. It just constricts more and more. (A semi-medical description of this condition can be found at the end). It would cause her to get sicker as she grew. While it was a straightforward surgery (basically clipping unnecessary heart tissue that shouldn’t be there), it was still full on heart surgery on a 4 year old, and she has the 4 inch battle scar on her back to prove it.
She is a healthy 8 year old today. The lessons here are these: Never underestimate a mother’s intuition. Not as a professional. Not as a mother. It’s there, serving your children. I almost stopped questioning because I didn’t want to look stupid anymore. Not because I felt she didn’t have anything wrong. But because I made it about me and what these doctors must think of me. The frustrating part of the story was not being listened to. Not taken seriously. Patronized or ignored. As a mom, it’s sometimes up to you to fight the battle solo. If you feel that intuition, go with it, no matter what. Believe the mom. She’s usually right.
*Vascular ring: Normally in-utero as the heart develops, it starts with several main vessels and eventually grows into a large aortic arch. The remaining vessel sloughs off as the fetus develops and the tissue gets absorbed or disappears. Most humans have a left aortic arch (and the heart is toward the left side of the chest). It’s amazing to look at a diagram of the human chest. The trachea and esophagus basically run close to/through the beautiful arches of the heart, nestled within it. There’s not a lot of room in there, everything is in a tight space. She happened to be born with a right aortic arch, and the left one failed to completely slough off, leaving a small band of living, but tight and non-growing, heart tissue that forms a ring that encircles the trachea. Being a right arch, this landed her main aortic arch on the RIGHT side of her trachea, which also pulled her trachea over to the left a bit. Not only did she have over 50% constriction of the trachea, but her heart was pulling it over and also pushing down on one of her lungs, causing further restriction. It’s an extremely rare condition, but interestingly one of the first types of heart conditions/surgeries performed. Find more information here: http://www.chop.edu/conditions-diseases/vascular-ring?gclid=CNuy7IWUkMsCFQiQaQodDZcJnQ#.Vs2BPebGBOg