Pregnancy and Diagnosis
Having lost our first pregnancy to a miscarriage, we were very nervous about this pregnancy. But after seeing our baby’s heartbeat at a 6wk ultrasound, having made it pass the week we miscarried before, having made it past the first trimester, then to our ultrasound at 19wks, we were somewhat relieved. We counted down the days to find out if our baby was a boy or girl. The ultrasound seemed to be going well. We saw that he was a little boy and tears overflowed from my eyes. Because of the baby’s position, the technician had a difficult time looking at our baby’s heart. So when she was finished, she said she was sending in the doctor to get “a better look”. Still, we did not suspect anything. After the doctor had finished looking, he set down the wand and said, “We need to talk about a few things”.
The markers they found were a choroid plexus cyst, a large neck roll at the base of the head, short femur bones, a calcium deposit in the heart, and a small left ventricle in the heart. After explaining his findings, the doctor told us that although the majority of those markers could turn out normal, he suspected that our son could have one of three things: Hypoplastic Left Heart, Trisomy 21, or Trisomy 18. Being a Neonatal Intensive Care nurse myself, I knew these conditions well and burst into tears. My husband Dennis didn’t understand. After an explanation, the doctor performed an amnio. An agonizing week later, the genetic tests revealed our son had Trisomy 18.
I feel blessed to have been at a hospital where they would not allow us to induce labor and therefore terminate the pregnancy. It encouraged us to remember that every life is sacred regardless of how long it is. God had trusted us with this child and it was His decision to decide how long our son would be with us.
The next four months we tried to enjoy the time we had with him as much as possible. I took time off of work to take care of my body and fully enjoy the experience. We were surrounded by incredible family and friends. My co-workers gave me a “Mommy Shower” where the gifts focused on things my husband and I would enjoy, as well as keepsakes. One thing we bought ourselves was a Fetal Heart Rate Doppler. This way I was able to check his heart rate and listen to it anytime I wanted. It was music to my ears. We recorded his heartbeat on a little box that we bought at Build-A-Bear and placed it inside a bear we had chosen. It is a precious keepsake we will have forever.
The Birth of Our Son
On March 13, 2007, at 35 weeks, I went into preterm labor. It was a long, sleepless night of listening to his heartbeat on the monitor. We were told that labor can be very stressful on babies with Trisomy 18 and a heart defect such as his. He held in strong. When my doctor arrived in the morning we decided to break my water. Shortly after, my contractions picked up and then slowed again. To get things going again, they started giving me pitocin. From there on, things seemed like a whirlwind.
As my labor progressed and my contractions got stronger, Riley’s heartbeat slowed. We had made a Birth Plan and explained that we wanted to know our son’s condition at all times. Our wonderfully supportive nurse, Jessica, calmly let us know that Riley’s heart was not handling the stress of labor. We had a choice: Slow things down only to try the same things later with the likely same result, or continue and try to progress labor to get him out quickly. We chose to continue on. Soon after, we listened as our son’s heartbeat slowed and faded to an occasional beat. At 2:55pm, after 27 hours of labor Riley passed away. He was born a couple hours later at 5:39pm.
We spent the next several days with our son. He stayed with us in our room and we soaked up every minute to hold him. We had previously contacted a wonderful photographer, Brandy, from http://www.nilmdts.com. She attended my delivery and captured the precious moments we had free of charge. I would encourage any family to at least look into this option. The professional pictures we have are such a treasure. I was also able to "find some good" in the situation by pumping and donating my milk to the mother’s milk bank. Knowing that I could help improve the lives of premature babies with my milk soothed my soul. You can find a bank near you by going to http://www.nationalmilkbank.org
Life After Loss
It has been almost 3 years now since we lost our son. We still miss him deeply, but I can tell you that the healing process is taking place. With lots of prayer God has allowed me to see a few of the reasons for Riley's life. After finding out about Riley's diagnosis it was too difficult for me to work as a NICU nurse, so I took time off to stay at home. Nearly 3 years later, I have healed enough to realize that God has granted me a special perspective and that I need to use my experience to love and care for the families in the NICU. So I have returned to work as a NICU nurse. And although I had to go through what was the most difficult time in my life, the experience of working through depression has empowered me to help others.
We are proud to say that Riley is a big brother. Ty Allan Black made his appearance in March 2008. The boys actually share the same birthday, March 14th. Since I had to schedule my C-section, we thought it would be neat for them to have the same birthdate. This way the day will be a celebration and not a day of sadness. We plan to have a cupcake with a candle just for Riley each year at Ty's birthday party. And on March 23, 2010, God blessed us with another healthy son, Drew Thomas Black. He is such a joy and a completion to our family. Having more children does not take away the pain or replace our son Riley, but it has given me hope and a reason to continue on.