In September, my husband and I discovered that we were expecting our second baby. Though the news was a surprise, we were very excited. At our first ultrasound appointment, the doctor was concerned that she saw fluid on the baby’s brain and referred us to a specialist in Grapevine. Our first appointment with the specialist was not good. He said that he believed the baby had a condition called “anencephaly”, a neural tube defect that basically means the baby’s brain and or skull did not fully develop. Babies with this condition do not live. The specialist said that because the baby was very small (I was only about 11 weeks pregnant at this point) he wanted us to come back for a follow-up appointment, just to be sure. He said that I needed to think realistically about the situation and make some decisions about whether I not I would continue the pregnancy. My husband and I went home, discouraged and heartbroken.
We had two other appointments with this specialist, each time praying for a miracle, but the prognosis was the same every time: your baby is not going to live. My husband and I made the decision for me to carry the baby as long as the Lord would allow. We continued to pray for a miracle.
Soon, the time came for us to be able to learn the gender of the baby, our doctor said that she would have to have a more legitimate reason for doing an ultrasound than just wanting to know the gender. I was so frustrated. I thought that with all of the bad news, I just wanted to know if this precious baby was a boy or a girl…something my family could celebrate. I decided to call another doctors office to get a second opinion about our baby’s condition and was secretly hoping they may be able to tell us the gender.
I went for an appointment at LSU in Shreveport and met with a specialist there. This doctor looked at all of our information and the ultrasound and said that she believed the baby not have “anencephaly” but something similar, called “encephalcele”. This condition was still very dangerous, but there was a ray of hope that the baby may be able to live, depending on the extent of the condition. She recommended that my family meet with specialists at Texas Children’s Hospital in Houston, so they could evaluate the situation. Plus, we found out that we were having a little girl! We decided to name her Jessica Rose. We were thanking the Lord for this ray of hope.
My family travelled to Houston on Thursday, February 16 to meet with doctors. They had scheduled several appointments, including an MRI and ultrasound. The following day, we were supposed to meet with the pediatric surgeon as well. Thursday afternoon, we were scheduled to sit down with the doctors to discuss a plan for Baby Rose. As we waited in the small family room, minutes seemed like hours until finally the doctors came in to talk. The news was not good. They said that our baby did not have a skull and was “incompatible with life”. Our appointments for the next day were canceled, as there was nothing more the doctors could do.
We don’t know what the future holds, the prognosis is very grim, but my husband and I are praying every day for a miracle for our baby. All of the specialists have no hope, but we believe that our baby is in God’s hands and He will have the final say. In the meantime, we are enjoying our time with her as best we can.
A friend of mine has put together a fundraiser for our family to help cover medical expenses or a possible funeral for Baby Rose. She is selling T-shirts for $20 (2X or larger is $22) and all proceeds will go to our family. Please do not feel obligated to purchase a shirt, your prayers and support mean more to us that you could ever know, but if you would like to participate and purchase a shirt, please let me know. I will need payment upon ordering. We will be taking orders for the next 2-3 weeks.
Below is a picture of the shirt. Text says “For this child I prayed. Praying for Baby Rose (initials) JSR (Jessica Rose Sutis) 1 Samuel 1:27”.