By Lara Gillham, Jackson’s Mom
Having a Child with a Medical Condition after Losing a Child
I guess I thought I had a free pass after Jackson died. If we have another child, that child will be perfectly fine right? What are the odds something could be wrong with another one of our children? I’ve come to realize I was wrong – nobody gets a free pass. Our son died of a rare undiagnosed heart condition that restricted his airway. His only symptom was heavy or noisy breathing, but as new parents who had been assured by our pediatrician that some babies just breathe heavily, we learned to accept it as normal. When our daughter Violet was born a year and a half after our son passed away, we were on high alert for anything that sounded like noisy breathing. Sure enough, some of her noises caught our attention. We had prenatal testing and diagnostic testing on her as a newborn, which had ruled out our son’s condition, and we were assured she looked perfectly normal. But we weren’t convinced. Call it paranoia, high alert, or just intuition. We took her to the same ENT that treated Jackson when she was about 2 months old. She was diagnosed with an airway condition called laryngomalacia that causes noisy breathing, reflux, choking/coughing fits, and sometimes babies turn blue from lack of oxygen or don’t gain weight well. Luckily she has a mild form and doesn’t need any intervention unless she worsens. We were told she would outgrow it by 18-24 months. My husband and I are holding our breath until then.
I’ve learned we aren’t the only bereaved parents that thought we had a free pass. We have several close friends that endured similar or worse with their subsequent children. One set of parents found out their second child had the same heart condition their first died from. Another set spent the first week of their next child’s life in the NICU because he had stopped breathing momentarily. But these parents have expressed some gratitude related to their situations. The first set is able to take precautions and closely track their child’s heart condition. The second set has had almost every imaginable test on their child, and now they feel better knowing that so many potential conditions have been ruled out.
I don’t write this to scare bereaved parents. I write this to show that although there are indeed extremely rough times we’ve endured, we unfortunately don’t get a free pass. We still endure the world as it comes. That’s honestly a hard one for me to swallow. I’ve caught myself plenty of times (too many probably) saying, well my child died, so screw that, when the situation at hand had absolutely nothing to do with me or my child. For example, if someone is rude to me in a store, my brain somehow tries to justify that nobody should ever be rude to me because I’ve been through the worst – my child dying. But I’ve learned over time that I have to stop looking at the world as if it owes me something. That person who was rude to me didn’t take Jackson away from me, and they probably don’t even know I lost a child.
The key is what we do with the information and the diagnosis of our subsequent child. Sure, we pity ourselves some (and honestly we deserve to do so), but then we take that information and do what we can with it to keep our child safe and alive. For my husband and I, that meant researching laryngomalacia and asking the doctor a lot of questions. That also means we keep a closer eye on Violet so she doesn’t choke while eating or stop breathing from crying too hard. There’s only so much we can do, but you better believe we are doing everything in our power to never lose another child.