January of 2008, dd was 18 mths and had been wheezing for most of the day. The ped had her on albuterol because we thought she may be developing asthma. By dinnertime, I was on the phone with pediactric after-hours because she was not getting better. While I was on the phone with a nurse, my dh was cradling her in his arms trying to calm her because she started getting upset. She was crying and pushing us away and then she suddenly got much worse. She had very labored breathing and her lips were starting to turn blue. I told the nurse.. or I guess she really just heard us getting panicky and she yelled at me to put the phone to Grace so she could hear her breathing. When I did she told me to call 911 immediately. Things had gone from "concerning" to a real emergency in a matter of seconds.
It's a long story but just to sum it up a bit, after hours in the ER, a slew of bewildered Drs, me in hysterics and my normally calm & rational husband very nearly losing his marbles, the leading Ped ER Dr came and informed us that our daughter had a congenital defect called CDH (congenintal diaphragmatic hernia) which is a hole in her diaphram. Her stomach had moved through the hole and into her chest cavity. Her lungs were being compressed by her stomach and she couldn't breathe. At this point my daughter had been intubated and they had scans that showed "something on her lungs" so when we finally heard what the actual issue was, as horrible as it seemed, we were somewhat relieved because they told us it could be treated. It wasn't a tumor or internal bleeding which is all we could think of. The hole had been there since birth and her stomach could be put back in place and the hole repaired. She could be fixed. AND we had one of the leading pediatric surgeons who SPECIALIZES in babies with CDH in our very own hospital. We were so lucky in so many ways because she had a right sided CDH so her liver blocked the hole and kept everything in place. That's why her lungs developed properly. If she'd had it on the left side- as most babies do- her lungs wouldn't have developed and she very likely would've died within weeks of her birth. 50% of babies born with CDH do not survive and out of the ones that DO survive, many have long term problems ranging from GERD to brain damage.
My daughter didn't start crawling until 12 mths of age (she was receiving OP at the time her CDH was discovered) and she started walking a week after her surgery (while she was in the hospital no less!) She also has a speech delay. She is now in speech therapy and doing great. So we are very lucky. Sorry such a long story but just wanted to share. Don't ever hesitate to call them if you think you need help. I shudder to think what could've happened if I'd given my daughter albuterol and put her in bed for the night. Probably wouldn't have happened bacause I'm such worrywart but if her symptoms had seemed a little better maybe? Maybe I'd plan to take her back to the ped in the morning? Ugh.. it truly is frightening.
I've been a mom for 18 years and that was the first time I'd ever called 911 but it saved my daughter's life.
It's a long story but just to sum it up a bit, after hours in the ER, a slew of bewildered Drs, me in hysterics and my normally calm & rational husband very nearly losing his marbles, the leading Ped ER Dr came and informed us that our daughter had a congenital defect called CDH (congenintal diaphragmatic hernia) which is a hole in her diaphram. Her stomach had moved through the hole and into her chest cavity. Her lungs were being compressed by her stomach and she couldn't breathe. At this point my daughter had been intubated and they had scans that showed "something on her lungs" so when we finally heard what the actual issue was, as horrible as it seemed, we were somewhat relieved because they told us it could be treated. It wasn't a tumor or internal bleeding which is all we could think of. The hole had been there since birth and her stomach could be put back in place and the hole repaired. She could be fixed. AND we had one of the leading pediatric surgeons who SPECIALIZES in babies with CDH in our very own hospital. We were so lucky in so many ways because she had a right sided CDH so her liver blocked the hole and kept everything in place. That's why her lungs developed properly. If she'd had it on the left side- as most babies do- her lungs wouldn't have developed and she very likely would've died within weeks of her birth. 50% of babies born with CDH do not survive and out of the ones that DO survive, many have long term problems ranging from GERD to brain damage.
My daughter didn't start crawling until 12 mths of age (she was receiving OP at the time her CDH was discovered) and she started walking a week after her surgery (while she was in the hospital no less!) She also has a speech delay. She is now in speech therapy and doing great. So we are very lucky. Sorry such a long story but just wanted to share. Don't ever hesitate to call them if you think you need help. I shudder to think what could've happened if I'd given my daughter albuterol and put her in bed for the night. Probably wouldn't have happened bacause I'm such worrywart but if her symptoms had seemed a little better maybe? Maybe I'd plan to take her back to the ped in the morning? Ugh.. it truly is frightening.
I've been a mom for 18 years and that was the first time I'd ever called 911 but it saved my daughter's life.