Devasting news

April 25, 2011

We had been counting down to our ultrasound appointment that was to occur the day after Easter. Is it a boy or a girl? What names should we use? Will the girls need to share a room if it's a boy? The girls were excited thinking about nursery themes and future toys that would be needed depending on gender. Both wanting to give the baby some of their things. They wanted to know where we would place the baby's highchair around the dinner table- they had watched the movie Ramona and Beezus and remember the scene where the baby spits peas all over Ramona. As it turned out, when the big day arrived the girls and Steve were all off of school and we were able to go to the appointment as a family. Steve and Breanne were guessing it was a girl and Alicia and I were guessing it was a boy. My guess of a boy comes from everything being so different with this pregnancy- seriously when are some of the symptoms going to calm down?

The ultrasound was done at the hospital that I work at in their Perinatal Assessment Center. The doctor performing the ultrasound was very kind and talked with everyone before beginning the ultrasound getting to know each of us. The ultrasound was to last 30 minutes and up to 3 hours depending on the findings. Ours lasted 1 hr and 30 minutes. The doctor had been focusing on an area on the baby's lower back but at that time I wasn't able to tell if he was focusing on the back or the kidney's. I had a passing thought while he was checking that area that the baby had spina bifida because I have an aunt who was born with it and Steve had a cousin that was born with it that died shortly after birth due to the hydrocephalus. My thought left soon as he continued to scan other areas of the body. Part way through he announced that it was a girl. I was definitely wrong on the gender. When he was done, he had asked the girls to wait in the waiting room while we heard the results.

The doctor began with asking questions regarding past medical histories of both of our families. He then told us the stats for downs syndrome with my "old maternal age". He in a round about way asked what we would do if the baby had downs or another birth defect. We had stated that we would love the baby just like we love the girls. He then told us that the baby does not have downs but a different birth defect was present. He confirmed what I had originally thought during the scan- the baby has spina bifida starting at the L4 level of her spine. He also stated she has a hind brain herniation and I finished his sentence by stating she has a Chiari malformation. (I also work as a medical assistant in the Chiari Clinic in our hospital once a week). We were also told the baby has started to show signs of clubbing in one of her feet. On the bright side, she has a normal appearing brain and no signs of hydrocephalus at this appointment. The doctor did give us more information on spina bifida including the problems with bowel and bladder and the ability to ambulate. He also rescanned the baby for us and showed us where the spina bifida was located and showed us the Chiari II and we were able to see that she was moving her hips and knees. We were also given information regarding fetal surgery to close the spine while in utero and information regarding closing the spine after birth. Either way the baby would need to be delivered via C-section at 34 weeks of pregnancy to prevent more damage from occuring to the spine as the space would getting smaller in the uterus as the baby grows. Both Steve and I were in instant agreement that we should try to have the fetal surgery done. The doctor informed us that the surgery was done at 3 locations in the United States - Philadelphia, Nashville and San Fransico. Since we wanted the surgery, he put in a referral to Vanderbilt Medical Center in Nashville. The doctor was very comforting and answered any questions we had- his bedside manner is very good.

I was in such shock and despair after the ultrasound that I had a very difficult time holding myself together in front of the girls and for the fact I was at my place of employment. After the ultrasound I walked up to my nursing unit while Steve and the girls waited for me and I spoke with my supervisor regarding the ultrasound findings. She was very support of and it helped me to be able to talk with her. I requested a PTO day for the next day as I knew I would not be able to hold it together in front of the patients. As my family and I walked out of the hospital, we decided that were going to name the baby Rachel after a loved person in the bible. Steve drove us home but the normal drive from Milwaukee to West Bend seemed to have stretched on for hours. I was crying the whole time and he was wiping away his own tears- the girls were worried because they knew something was wrong but not what was wrong. We stopped by Steve's mom (MaryEllen) to talk with her while we had the girls play outside. She knew the news was not good by looking at us and just held me while I was crying and Steve was telling her what was found. Being a RN she agreed that the fetal surgery was the best option and was very hopeful regarding the other issues such as the need to catheterize the baby and the use of braces. She had helped take care of her sister Jean's baby that had been born with the spina bifida and hydrocephalus but the medical advances (over 50 years prior) were not what they are today. When we got home I had called my parents and updated them- my dad was weepy as he had helped take care of his sister that was born with spina bifida and remembered all that she went through- my mom was heartbroken also but very optimistic about the future for Rachel. Later that evening we did tell the girls that the baby has a injury on her back that she needs surgery for- we left it with as simple of an explanation that we could. They seemed to understand and were very excited to have Rachel in their lives (later that night and to the current date when they play dolls they already have one of the dolls named Rachel and always make her the hero of their play--very sweet)