Our journey had already been tough. With one miscarriage just 3 months before the joyful news of our second pregnancy, we were excited to be blessed once again. Instead of a baby this time, we will have to let go of another angel.
This blog is meant to aid in the healing process for us, and also help couples who may be experiencing the same struggle. Please read the blog to hear about Baby Johnston’s fatal diagnosis. God Bless.
On April 7, 2012 – just one day before Easter- I got that “positive” on a pregnancy test I was hoping to see. Stevie, my husband, was excited when he received an Easter basket filled with little socks, a bottle, binkies and a onesie. I made little newborn onesies for each of the new grandparents, new aunts and new uncles that would be that read “I love Grandma” or “I love Uncle Alec.” The due date was set at December 18, 2012. We called the baby our “little Christmas present.”
At my 8 week appointment we heard the heartbeat for the first time. A strong 170…baby wiggling and looking great. I framed the ultrasound picture we got and it sat in our living room. I was impatient for my next ultrasound, however my nurse practitioner, Cindy, said it wouldn't be until week 19.
Around week 11 I felt flutters. Reassurance that baby was doing great. I paid attention so that I may feel them again, although they were rare. I noticed I began showing, I loved my little bump…and wearing maternity jeans. I had looked forward to maternity clothes and finally was able to wear them.
On June 5th, 2012 Stevie and I went in for a scheduled check-up appointment. At that point I was 12 weeks, and hadn't even had morning sickness. I told Cindy how I was having the most easy-going pregnancy. My only complaint was my left leg going numb periodically. Cindy and her assistant began to use a Doppler to listen to baby’s heartbeat. After about 15 minutes of listening, they still found nothing. They had Stevie and I wait for an ultrasound tech and room to find baby. At first, I wasn’t nervous. I knew baby was still small – I was actually excited – I got another ultrasound! They called us in, and the ultrasound began. We saw baby and I lit up. We saw baby’s little face, hands and legs. The tech paused and said…”I don’t see a heartbeat.” My heart began racing…thoughts about another miscarriage at nearly my 2nd trimester circled my head. A few moments later, she said, “There it is.” A gasp of relief…baby’s heart was a strong 157. She continued, “But there is something wrong. It appears your baby has an omphalocele.” She went on to explain that baby’s organs were growing on the outside of it’s body. She also said the head looked abnormal. I began asking questions about it being life threatening. Typically omphaloceles are not, baby just needs surgery after birth. I cried in Stevie’s arms. How could this happen? What could I do?
We were referred to a specialist, and the appointment was scheduled for 3 days later. The longest 3 days of my life. On June 8, 2012 we had a level 2 ultrasound to find out more information about the possible omphalocele and see if any other chromosomal abnormalities were present. I had learned from reading articles that there were two types of omphaloceles- the smaller one occurs when the intestines are just on the outside of the body, usually near the umbilical cord (1 out of every 5,000 babies experience this). The larger one typically contains the liver and spleen and is considered a severe case (1 out of every 10,000 babies experience this). We had prayed for the smaller one and nothing else…
Dr. Solomon walked in the room and asked us what we knew about our baby’s condition. We responded that we knew very little, and asked what they found. She answered first that our baby has a severe case of an omphalocele…the hemorrhage of organs was close to the size of the baby itself. We took a deep breath. Part of me was trying to reassure myself that surgery would fix it and everything would be okay. Dr Solomon continued “But the omphalocele is the least of your worries.” She asked if we knew what spina bifida was. We said yes, and she said that our baby has a form of spina bifida, actually the most severe case. It’s called anencephaly. Our baby’s skull had not formed properly, and the brain was completely exposed (spine deformities occur in about 1 in every 1,000 births, however, I couldn't find statistics on our baby’s condition specifically). She told us that there was nothing that could be done to fix this. This condition was 100% fatal. Baby would certainly die, if not in the womb, but within a few days if born.
With the option of terminating the pregnancy given to us, I quickly declined. I am still the baby’s mother, and it is my job to protect baby and be a good mother with the time God has given me with it. Baby is not in pain, and there is no risk to me…so I intended to carry baby until God was ready to take it. Natural conception to natural death.
A meeting with a genetic counselor revealed to us that Stevie and I may carry genes that, when matched up, cause the abnormality. We were offered genetic testing…but we also declined this for now. Even if I know of a potential risk, it would not keep us from trying for children in the future.
As we learn more, we will post. I haven’t been able to find many women who chose to carry baby…or any women who had a baby with BOTH severe conditions like ours. For now, we take it day by day…knowing our baby will soon be our guardian angel along with their sibling.
No comments:
Post a Comment