Our Hailey Judith

Posted on Posted in Alobar Holoprosencephaly, Stories, Trisomy 13 (Patau syndrome)

 By Jess 311

We went home and sat on the couch for a week, crying and holding each other.
We went home and sat on the couch for a week, crying and holding each other.

I couldn’t believe it when the home pregnancy test was positive. I thought surely it would not happen so soon. It had only been two months since we started trying. I can’t describe how excited I was, but I thought for sure it couldn’t be true, that I must have let it sit for too long. Well, three more tests with lines and one digital test later and we new for sure. We were having our first child.

We couldn’t wait to tell people. I couldn’t wait to get to the doctor to hear the heartbeat. I’ll never forget the first time we heard it. It was kind of soft because it was early and I soon as I heard it you could hear my heart start to race. After this, my husband and I were so excited that the first ultrasound couldn’t come fast enough for us. My doctor said we could have it at 18 weeks, so we waited impatiently.

Oddly though, while we waited I prayed constantly for our baby to be okay and I never knew about the type of problem they were going to find.

At 18 and half weeks we couldn’t wait to get to the ultrasound office. We were both anxious to know the sex of our baby. After being in that room for over an hour and the tech not saying much, she walked out saying she needed to see if they needed more pictures. They did. I began to feel uneasy.

I could see the baby on the screen and I saw the extra digits on one hand but thought I must have been seeing things. Her facial structure did not seem right either but I figured, what do I know? I’m not a radiologist. All I knew was there was my baby moving around like crazy in there. I was amazed I couldn’t feel anything. So, we left and were told to meet my doctor at his office. I was planning to go there anyhow for another reason, but it wasn’t to meet him. I held my breath all the way there and didn’t say a word to my husband. I figured if he didn’t suspect that anything was wrong then I shouldn’t worry him.

I wasn’t wrong. My doctor walked into the room and told us to sit. I hated those words. He then said they couldn’t see our baby’s stomach, that she had holoprosencephaly, a problem with her kidneys, a cleft lip and palate, and polydactyly (extra digits). The list grew later, but they could see all of this on a level one ultrasound. Amazingly though, they could not tell us the sex. We went home and sat on the couch for a week, crying and holding each other. We couldn’t believe the nightmare we had been thrown in to.

Next we went for the level two ultrasound and amniocentesis. The level two confirmed the level one and showed a few other problems. They called it Trisomy 13. It was not compatible with life. We talked to a genetics counselor who said the baby may not survive the pregnancy and if she did she probably would not survive delivery. We knew what we had to do. We loved our baby so much we couldn’t let her suffer. Now we just had to decide how. I knew I could not go through labor and delivery. I did not want to associate that with death. I also felt in my heart that it would be much quicker and less traumatic for me and the baby to have D & E. One other truth that makes me so sad is that I could not bear to see her. I have a picture of her in my mind. She is this lovely little pink soul and I couldn’t bear to see the deformed body that nature had created for her. I pray every day that she forgives me for that.

With our decision made, we found out that our hospital would not do either procedure due to a strict Catholic owner and we were forced to go to a clinic. We were told that I would have to have laminaria inserted twice to dilate my cervix. This was painful but not as painful as knowing I was losing my daughter. On the third day we drove back to the clinic in silence. My husband had his hand on my stomach the entire time. Before I knew it I was taken in and it was done. We sent our little girl to heaven where she could be whole and free from pain and suffering. It was the hardest thing I’ve ever done. I felt so empty for the weeks to follow. I never knew how much of her I felt in me until she was gone. We named her Hailey Judith.

A week later, we had a beautiful Indian ceremony on the beach. Even though we are not Indian, we are very spiritual and this ceremony was designed to release her soul to the heavens. My wonderful grandmother performed it. It brought us some closure and my husband and I felt a sense of peace afterward.

It has now been almost two months and the days get easier. The grief comes and goes but it is no longer consuming. We plan to try again when the time is right. Hailey has made such an impact on our lives. We are different people now because of that little angel.

Thank you for touching my life Hailey. Mommy and Daddy love you more than we ever knew we could love anyone.

photo credit: Sofa via photopin (license)