O'Connor, Clare

[left:4ac497f302]http://www.cherubs-cdh.org/Album/new/oconnor2.jpg[/left:4ac497f302]I would like to share my story with CHERUBS, as this support group is wonderful and has helped many of us, including myself, in answering so many questions to this birth defect.

Our story begins in June of 1999, when my husband and I went in for a routine 20-week ultrasound. We expected to walk out with a picture in our hands and smiles on our faces, naturally. We already had a very healthy beautiful 2 year-old girl at home and couldn't have been more excited to have our second child. After the ultrasound tech informed us there was a problem and went to get a doctor who immediately did a level 2 ultrasound, we were told right there of our daughter's CDH diagnosis. After going to see my regular OB, he had informed us that there was a nuchal thickening (thicker neck tissue), which increased our chances of Down syndrome to a 20% chance. So a few days following I had an amnio done. We asked for FISH results, which gave the results back in 3 days for the major chromosomal defects. Needless to say, it was the longest weekend of our lives waiting for these results. And to top it off, I was a bridesmaid in my sister's wedding that weekend, so we didn't want to tell the rest of the family, or they would have been too upset at the wedding. So we just told our parents and hid it from all 7 of my siblings! (Although now they say they knew something was wrong that weekend-- I guess you can't hide sleepless nights from those who know you best.)

After receiving the phone call from the genetic counselor at Northwestern Hospital in Chicago that everything with the chromosomes was fine, we then just had to wait out the next 20 weeks until my due date in October. We were referred to the best pediatric surgeon at Children's Memorial Hospital in Chicago who would do the surgery. After meeting with her and several of the other specialists at the hospital, we were terrified to have our baby, as she was so safe inside of me since she didn't need her lungs then.

I was scheduled to be induced on October 20th, but was already having contractions before even getting there that morning, so I needed very little pitocin to get going. After a very easy labor and delivery, 5 hours total and only 7 pushes, out came our beautiful 7 lb 2 oz baby girl. I was barely able to get a look at her before they took her to another area in my room to work on her right away. There were so many specialists in the room when she was born that it was very overwhelming. But they all knew exactly what they were doing, and I thank God that we knew ahead of time, or it would have been even scarier. They immediately intubated her and paralyzed her. I kept asking if she was going to make it, and they just kept telling us they would do everything they could for her.

After taking her to the NICU, I was then given a room on another floor instead of the maternity ward. This really meant a lot to me that I wouldn't have to see or hear the other babies when I was in such a state of shock and scared to know whether our baby was going to live or not. After stabilizing her as best they could, they transported her by ambulance to Children's Memorial Hospital neo-natal intensive care unit. My husband Peter followed her there while I had to stay at Northwestern to recover for the night. Luckily, one of my best friends, Heidi, came to stay with me and bring me dinner, so I wouldn't be all alone there. I received phone calls about every 15 minutes from Peter with updates on Clare's condition, as it was changing constantly those first few hours and days. I was released from the hospital the following morning and was never prepared for what I saw-- my tiny little angel lying there with tubes coming out everywhere, hanging on for dear life. The doctor had informed us that she was not yet stable enough for surgery, and she could "crash" at any moment. So we spent the next five days with lots of ups and downs-- blood gas readings, nitric oxide, etc.-- but luckily she just escaped having to go on ECMO.

On day five, she had her repair surgery, and after about 3 and 1/2 hours we received word that she was doing fine. The surgeon did say her hole was so large that nearly the entire diaphragm was missing, and they had to use a large piece of Gortex to patch it up. Her recovery actually went very smoothly after that, as she was home from the hospital in 21 days! The nurses, who were absolutely wonderful in the NICU, couldn't believe how well she responded to everything. They said she truly was a fighter, and that made a difference in her recovery. After pumping breast milk every 3 hours for 21 days, I was finally able to nurse her, and it went very well. She did come home from the hospital with a feeding tube in, just to make sure she was getting enough, but it was out in three days, and she ate much better after getting it out. I did rent a baby scale from a lactation consultant's office near our house, as I wanted to make sure she was gaining enough weight every day. We were lucky that there had been absolutely no complications at all, including reflux for the first 8 months. Then they couldn't figure out why she wasn't gaining weight and was only 12 lbs at 8 months.

It turned out, after getting an x-ray, that her Gortex patch had come loose, and her stomach and intestines were back up in her chest cavity. We didn't expect this to happen, as it only happens in 20% of babies within the year after their first surgery, so we were very nervous and shocked. We had to go back to Children's for her second repair surgery. Since there was more muscle now to sew the patch to, this one should hold longer, we are told, but they can't predict how long unfortunately. We just have to take it one day at a time. They will give her an annual x-ray to make sure it's still in place, since her patch is so large.

We have been so blessed by God to have such a beautiful, happy baby. Looking at her now, you would never know she had anything wrong with her when she was born. Her weight is even on the charts in the 25% for her age. And her scar is healing very nicely. She has such an incredible personality-- I can't even imagine not having her in our lives. The only other surgery she may need some day is to have her pectus repaired. She got this as a result of her CDH. But that would be years down the road and is not life-threatening like her first surgery was. For anyone out there reading this who is going through this, I would be happy to answer any questions you may have. Thank you, Cherubs, for listening and for informing people via the internet about this terrible birth defect. Without you, we would have felt very alone, but after reading your letters we realized how many people in this world are also going through this same situation.


Written by Clare's mom, Lori O'Connor (Illinois)
2001