My pregnancy and diagnosis
We found out we were pregnant with our little Ally Grace in November of 2008. We were so excited as we had been trying to get pregnant for awhile. Our excitement was dashed in February of 2009 when our doctor called me to tell me that the results of my maternal serum screen had come back with “a higher than normal” risk of our baby having Downs Syndrome (Trisomy 21). Our doctor explained that she could refer us to an OB/GYN and we could have an amniocentesis done as well as a detailed ultrasound if we wanted. We decided that we needed to know what was going on with our baby (if anything), so we had the detailed ultrasound as well as the amniocentesis done on February 17, 2009. The doctor who analyzed our ultrasound informed us that she thought our baby had trisomy 18, not trisomy 21. She thought this because she could see that our baby’s little fists were clenched and she had a hole in the heart. But, we would have to wait 2 weeks for the results of the amniocentesis to come back to be 100% sure of the diagnosis. It is difficult to explain how we made it through these two weeks of waiting. It was an emotional roller coaster to say the least. Emotions came and went…anxiety, anger, sadness, guilt, devastation, all the while hoping that the result would come back saying that our baby did not have a chromosomal abnormality, and that he or she was a healthy 20 week old baby. On March 3, 2009, the wait was over. Our doctor told us that our baby had Trisomy 18. I do not remember much else from that day, I do not remember driving home from the clinic or even who I phoned to tell our sad news. All I remember is sitting on our couch at home and crying and crying. How could this be true? This life growing inside of me, the baby that both my husband and I so desperately wanted had a chromosomal abnormality that was “incompatible with life”.
We were faced with a choice, a decision that no one should ever have to make. We were told that if we chose to continue on with the pregnancy our baby may die in utero at any time in the pregnancy, or if I went into labour, our baby may not make it through the labour, or if our baby made it through the labour, she would likely die soon after birth. Wow. I know that there were some numbers thrown in there as far as percentages go, but I did not hear or absorb any of that. All I heard was the word ‘die’. Our baby was going to die. The next thing I heard was the second option. We could choose to terminate the pregnancy. I know that my husband and I went home that day in shock and devastation. How could we possibly make a decision like this? It was agony and I have never cried so much in my life. We did make the decision to carry our baby to term. I could not stop thinking that our baby was alive inside of me at this very moment, so who were we to make a decision that would end our childs life? We did not know how long she was going to live, and we wanted to give her a chance to live so that we could meet her and hold her and tell her how much we loved her. We prayed that we would be able to do that. We knew it would be extremely hard for the next 4 months of the pregnancy, but that was our decision. We have amazing family and friends who were (and still are) there for us and told us that they would support us in any decision that we made.
The birth and life of our beautiful daughter
I was induced at 37 weeks. This was such an emotional time… it should be so exciting to know that your baby is coming into this world. We knew that she was coming into this world, but with such uncertainty. I prayed that she would be born alive so that we could all meet her. We got our wish. Ally Grace Hiebert was born on June 23, 2009 at 1225 weighing 4 lbs 4 oz. The first words out of my mouth as soon as she was born were “is she alive”? Our doctor said that yes she did have a heartbeat. She handed our beautiful girl to me and I immediately cuddled her skin to skin with me. She was very blue and was gurgling a little bit. We had decided on comfort care for our little baby, so there were not going to be any major medical interventions. The nurse took her from me to suction her mouth a little bit. This seemed to help as then she let out a little weak cry. What a wonderful noise to hear! The nurse wrapped her up in some blankets and her daddy got to hold her for the first time. Now that was love at first sight! I have never seen such a proud dad. Both my husband and I were in awe of this little girl we were holding. We had no idea what to expect during the labour and her birth and now here she was with us, alive, and ready to receive all the love that we were so ready to give her. We had a lot of family members with us at the hospital and the hospital staff let them come into the delivery room right away to meet our little miracle girl.
As the minutes and eventually hours passed, our little girl’s skin started to turn pink. Her little hands and feet were still quite blue, but the rest of her skin was a nice pink color. Her little fists were clenched, which they did tell us was characteristics of a baby with trisomy 18. All we saw was a beautiful baby girl. There was no mistaking this baby for a boy! Her little facial features were so delicate and perfect just a perfect little girl. We stayed in the hospital for 2 nights and our baby was still with us. She was drinking breast milk that I pumped and then fed her through a tiny tube. She was too weak and her mouth was too small to breast feed. Our family members went out and bought our baby a car seat as we had not bought one, thinking that we were not going to take Ally home. We left the hospital with our little girl and so many well wishes from the staff. We had great nurses and doctors taking care of us.
We got our little girl home and settled into a routine. We were both so tired as every parent is with a newborn, but we really didn’t care. Whenever I would feel myself getting grumpy about lack of sleep, I would tell myself “your beautiful daughter is here with you at home”. This is what we had been hoping and praying for. We got to give our little girl her first sink bath (well, grandma Haynes did)! We got to change her diapers and change her clothes. She looked so beautiful in pink! We got to sit with her in the rocking chair and cuddle her and sing to her. We got to take her in her stroller and take her for a walk on the path near our house. We got to feed her and burp her. We were so blessed to have been able to do all of these things with our daughter. We will cherish those memories forever. Our little girl died peacefully at home in the arms of her mom and dad on July 4, 2009. We had 11 amazing days with our Ally. She has changed us forever. We love you baby girl. You are forever with us in our hearts.