[left:d7c290db2d]http://www.cherubs-cdh.org/Album/new/browning-anneliese.jpg[/left:d7c290db2d]I had a happy, uneventful pregnancy until week 28, when my local OB doctor mentioned the he was concerned that I was measuring small. I wasn't too worried because small babies run in our family. At 31 weeks we went to the local hospital for an ultrasound so that my doctor could make sure that everything was okay, since he was worried about IUGR. Our lives seemed to fall apart that day when we were told that her heart was on the right side, that they couldn't find a diaphragm, and that her stomach and intestines were up in her chest cavity. A few days later, we were in Salt Lake City seeing a perinatologist that did another series of ultrasounds and other tests. It was on that day, January 5th, that we learned that she had a diaphragmatic hernia. Our doctor did an amniocentesis that day, and we were so relieved, 18 days later, to find out that her birth defect was not chromosomal related. The perinatologist was realistic but also optimistic, and we were convinced that after Anneliese was born, she would have surgery and be home in a few weeks. To us, there was no other outcome.

The local OB continued to care for me during my pregnancy, and I was supposed to move to Salt Lake City and stay at the Ronald McDonald house when my pregnancy progressed to a certain point. (Our local hospital here in Wyoming is not set up to deal with high- risk pregnancies.) At 34 1/2 weeks, I went in for a checkup and found out that I was 80% effaced-- time for us to head to Salt Lake City. We got home from the doctor’s office and packed up, then drove the 2 1/2 hours to the University of Utah Hospital. I didn't even think I was in labor yet, but 2 hours after we got to the hospital, my water broke. I was in a panic, thinking it was too early. They gave me one shot to help her lungs develop. They didn't want to stop the labor for fear of infection, and the following night, Anneliese was born. She was only 3 lbs. 5 oz., but she had these cute little chubby thighs, and to us looked perfect. They told us that the umbilical cord was short, but I still don't know why or if that is related to her low birth weight.

Prior to her birth, the NICU doctor had asked us if we wanted to hold her until she died or try to save her. There was no option for us-- we had to give her a chance! She made it through the delivery, and they were able to stabilize her. The next hurdle was to transport her down a long hallway to the NICU at Primary Children's Hospital. The doctor said she may not make it through the trip, but she did. She continued to be stable that night, and we visited her at about 2 a.m. after they had gotten her situated there. It was overwhelming, seeing our dear, sweet baby girl hooked up to IV's, life support, and a chest tube. The second night after she was born, she went downhill, and they told us she would probably not live through the night. That night, we (including my mom and dad) stood at her bedside while she was baptized. She surprised the medical staff again by getting better.

She had some more, smaller ups and downs, and a little over a week after she was born, her surgery was done. The surgeon had warned us that her defect was very large and because she was so small, she might not make it through the surgery. Her vitals went haywire whenever she was moved that they had to perform her surgery right there in the NICU. To everyone's surprise, she "sailed" through the surgery, and for four wonderful days afterwards, she did very well. The defect wasn't as large as they thought, and they were able to repair it without the use of a gortex patch, a very good sign! At that point, they were talking of starting to wean her off the ventilator. We were so happy, sitting next to her for hours, telling her of all the things we would do when we all came home together.

On days when she was doing well, we were able to cup our hand on her small head, and it was so comforting to her I think, since we couldn't hold her. It was definitely a comfort to us to be able to touch her like that. She was paralyzed with a drug called Pavulon the whole time, but sometimes she would try to open her eyes when I talked to her or move her head a little when the drug started to wear off. It would break my heart to see her making sucking motions with her mouth. I know she wanted to move so badly. I was constantly worried about her every second of every day, asking the nurses if she had been given her sedatives recently, was she being given enough painkiller, etc. I cherished the times I got to help change her diaper or put Vaseline on her little lips. One night, when she was doing really well, the nurse let me put baby lotion on her feet, legs, arms, and part of her back. Normally, she couldn't tolerate that much stimulation, but that night she did so well, and it was one of the happiest moments I had with her, being able to caress my baby girl that I loved so very much.

On the fifth morning after her surgery at 5 a.m., we received a call from the hospital that her oxygen saturations had fallen, and nothing they were doing was working to bring them back up again. We rushed to the hospital, and slowly she improved when they turned up the mean on her ventilator. (Turning up her support was a risk since it put so much pressure on her lungs, and could blow a hole in them, which is what happened a few days later.) Then she started having some major ups and downs, and they ended up putting a chest tube back in that they had taken out and an additional one because of the pnemothorax that had developed in both lungs. We were devastated when we found out that there were holes in both of her lungs, but we were still trying to be positive because we had been told that the lungs heal very well, that it was just a matter of time. One night her oxygen levels fell to 30% for just a few minutes, then came right back up to 95% when they repositioned her chest tube.

Her last day with us, she did excellently; all her vitals looked very good, but that night after the shift change, she went downhill. I knew in my heart, just by looking at her, that she didn't feel good and that it might be time. The doctors that were caring for her that night were wonderful, doing everything they could, but they also told us that it might be time for us to say goodbye. We sat with her all night, off and on, while they tried to make her better. At 3:00 a.m., I had her primary doctor paged, and he came in to be with us while she was taken off ventilator support. I held her while they took her off the support, the first time I was able to hold her in the 18 1/2 days of her life. My husband Scott and I took turns holding her in a quiet room while she died. Those were the happiest, the saddest, and most difficult moments of my entire life. My arms now feel so empty.

I just couldn't consent to an autopsy. I felt like her little body had already been through too much. We had a public funeral service and family and friends over to our house afterwards. We wanted everyone to celebrate with us the birth of our beautiful daughter Anneliese. We showed everyone pictures of her and continue to do so because we are so proud to have had her and wouldn't trade those 18 1/2 days with her for anything. Anneliese was a blessing and a gift from God. We love her and miss her so much.

Written by Anneliese's parents, Kathy & Scott Browning (Wyoming)