Receiving the official Trisomy 18 diagnosis was not as traumatic as receiving the initial news that something was wrong. I believe that during the 2½ weeks prior to her diagnosis we were we were prepared to accept whatever lay in store for us.
Hope was born 3 months and 5 days following her diagnosis. During that time, my pregnancy progressed in many ways as a normal pregnancy ought to develop. I visited my obstetrician every 4 weeks and every 2 weeks during most of the last trimester. (Hope was born 5 weeks early so my last trimester only lasted about 8 weeks.) We also continued to visit the Maternal Fetal Medicine doctor. He and his staff monitored Hope’s growth and development. During our visits with him, we viewed improvements in some areas but definite signs of Trisomy complications in other areas. The cyst on her brain decreased in size. The heart ventricles appeared to be growing. Her overall size, however, was outside the limits of “normal”.
One of my physical challenges during the pregnancy was the presence of extra amniotic fluid. I am a very petite person and with the extra fluid characteristic of a Trisomy pregnancy, I found myself very uncomfortable at times. Sitting was very difficult as the baby and the fluid were pressed into my ribs. I developed bruises and irritation marks close to my ribs. Luckily, however, I was able to feel Hope’s legs and feet quite regularly—right in my ribs!
Hope was an active baby! (This was my first pregnancy so I don’t have anything to compare it to, but I felt that she was active.) She developed somewhat of a schedule and Mike and I were able to feel her movements most evenings later in the pregnancy. This was a magical time for us. In Mike’s talk at her funeral, he commented that these were his first interactions with his daughter and it brought me a great deal of joy to have him share in the joy that I experienced as she moved and lived inside of me.
One of the biggest challenges for Mike and me was to determine a plan for her actual birth. Especially during the last few weeks of my pregnancy I felt very anxious and tense every time we tried to talk about a birth plan. My main concern was whether or not to schedule a C-section or to deliver her vaginally; and, if we went with the vaginal route should I have an epidural. These are important and personal decisions, but as you will see from our story, we never did have a chance to formalize a plan, and everything still worked out OK. I believe that with the emotional strain of not knowing how long Hope would live, I felt helpless and out of control. I wanted so badly to know what would be the best birth option for her, but I didn’t have a crystal ball and couldn’t see what would be best. I believe 100% that because of lots of prayer and because of the comfort of the Holy Ghost, we were able to make good decisions when the time came.
Backing up a bit to the source of the conflict, I had read many accounts of Trisomy parents who decided to schedule a C-section. I believe that this was in an effort to minimize trauma to the baby and to avoid the emotional stress (of the parents) during labor. This all sounded good to me! Hope is our first child so naturally our main concern was whether or not a C-section would impact future pregnancies and deliveries. We first had the opportunity to talk with our obstetrician. He was very supportive. He told us that a C-section might not be a bad idea because of the reasons I have mentioned. He told us that, yes, there are risks involved, but that most mothers are able to deliver vaginally after a C-section. I knew that I wanted a C-section although I wasn’t 100% convinced that it was the best option. Mike was very supportive of me. He was very concerned about me emotionally, but it was apparent that he had reservations about the C-section. We agreed that we could tentatively plan on the C-section but that we’d also get the opinion of our Maternal Fetal Medicine doctor.
A couple weeks later as we visited with the Maternal Fetal Medicine specialist, we sought his opinion with regards to the C-section. He made it clear that he was not in favor of that option! I was so torn! He let us know that although the risks are small, there are risks to a C-section. He expressed his concern that with the likelihood that Hope would die shortly after birth, he’d hate to see future pregnancies endangered. It was very comforting, however, to hear him tell us that if Hope lived through the pregnancy, he did not feel that a vaginal birth would prevent her from being born alive. As we left the doctor’s office that day, Mike encouraged me not to think about it for a while! She was not due for 8 weeks and I felt that this was going to be the most difficult decision of my life.
I must interject here that the only thing that saved me through this time was prayer and faith. I prayed everyday that Hope would be born alive. I knew that I must accept the Lord’s will, but I wanted so desperately to see her alive. After a while, I began to feel that this request could be granted. I never had any sort of an impression as to how long she’d live, but both Mike and I did have a peaceful assurance that she’d be born alive. I trust that this calmed my fears about the birthing decision. I was (and I am not sure at what point) able to leave it all in the Lord’s hands. I knew that I had felt a sweet and peaceful assurance that she’d be born alive. I trusted that if there was a birthing plan we needed to adhere to in order to make that happen that the Lord would let us know what it was.
Now, having said all this, we did have every intention to create a specific birthing plan. Here are a couple links to some we found. We expected to use these plans as a basis for our own plan, personalizing it to our needs and desires: