Strong, Karina

[left:eeee07adcc]http://www.cherubs-cdh.org/Album/new/strong-karina.jpg[/left:eeee07adcc]I had my regular ultrasound at 20 weeks gestation. They couldn't get a good look at the heart, and they couldn't see the stomach at all, so I went back 2 weeks later for another one. That's when Karina was diagnosed with CDH. Luckily, my OB had another patient, about 10 years earlier, that had a CDH baby. So she was able to plug us in to all the right people. We started an amazing round of appointments with pediatric surgeons, neonatologists, pediatric cardiologists, genetic counselors, etc. We also spent a lot of time researching CDH, mostly on the web, so we knew what all these specialists were talking to us about. Somewhere in the midst of all of these appointments, our OB, together with a neonatologist from the NICU at Strong Memorial Hospital in Rochester, NY (where we live) recommended that we have the baby at the Children's Hospital in Buffalo, NY. Knowing what they did (early occurrence of the hernia, stomach and intestines present in the chest cavity), they figured there was a pretty good chance that Karina would need ECMO, and Buffalo was the closest hospital with ECMO. So we started a whole new round of appointments with doctors and surgeons from the Children's Hospital. The next few months passed fairly quickly, probably thanks to the crazy round of appointments we had.

Early one Monday morning, a few days into my 40th week, we made the one-hour trip to Buffalo to be induced. They had me on pitocin drip for two days, but I didn't progress. By Tuesday evening, Karina was distressed, so they did a c-section. She was born on April 8, 1997, at 8:50 pm. Thankfully, I was pleasantly doped up that first night, so I didn't lie awake wondering and worrying. They did wheel my bed into the Intensive Care Nursery about 1:00 a.m. on my way out of recovery, so Tim and I could see her. When I woke the next morning, I learned that she was stable on the high frequency vent, and that the doctors were cautiously optimistic. I remember at that moment knowing within myself that Karina was going to be okay. I had heard her cry when they delivered her the night before, despite their best efforts to intubate her before she could inhale. And they tried to give her artificial surfactant, but she would have none of that, just coughed it up. So I knew she had spirit! (I should mention that I'd had two shots of steroids, 48 and 24 hours before being induced, in hopes that it would help her lungs to mature.) The surgeons also told me that according to the x-rays taken right after her birth, her stomach was NOT in her chest cavity, as it WAS in all the ultrasounds I'd had. They called it a sliding hernia, one in which the stomach and intestines kind of floated back and forth between the chest and abdominal cavities. When they did her surgery, the stomach was back up there, along with intestines.

Karina was on the high freq vent for 1 1/2 days, and then on a regular vent . They decided to wait a week to do the surgery, since she was doing okay. So, for the first seven days, she just hung out. They had to regulate her blood pressure with medicine, gave her antibiotics, had her on various levels of oxygen, depending on her mood :). She dropped from 6 lbs 2 oz to 5 lbs 12 oz, not any worse than regular baby weight loss. They did the surgery at one week, were able to stitch up the hole, and removed her appendix, since her intestines were malrotated. She almost went back on the high freq vent after the surgery, but decided to behave herself and stayed on the normal one. They continued with some of the blood pressure medicine, and antibiotics for the next few days, and gradually weaned her off the oxygen. She came off the vent on day 11, and we got to hold her that day. As all of you parents know, there's nothing in the world like that moment!! They started feeding her the next day, and I breastfed her when I was there. We got to take her home on day 16. They were a little concerned about how much she was (or wasn't) eating, she was barely taking 2 ounces every 3-4 hours. But with some strict instructions and an appointment with her pediatrician set for Monday morning (it was Thursday evening when we took her home), they let us go. They needn't have worried -- Karina went from 5 lbs 14 oz on Thursday to 6 lbs 5 oz on Monday!!! She just needed full-time 'mommy milk'!!

I can't express how amazed and thankful I am at how well Karina did. The doctors and nurses constantly told us how amazing her progress was. And we were told how lucky we were. I prefer to thank God for his goodness!! For a baby with only about a 40% chance of even living, she certainly showed them.

We took Karina home totally free of meds, with no health problems. She's had the usual round of development testing, and hearing testing through her first year, and she's completely normal. She had a couple of colds her first year and handled them just fine, with no complications. She did have to have surgery again at 3 months because of adhesions, but she had no bowel damage, and has been fine since. I admit that when I read some of the other babies' stories, I almost feel guilty that we had such a comparatively 'easy' time, but it also makes me marvel all over again at the miracle Karina is.


Written by Karina's mom, Kim Strong (New York)
1999