StoriesVACTERL

I Chose Peace

VACTERL

By reading this story I hope you find comfort in knowing you aren’t alone. I hope some of the strategies I used to cope will give you a beneficial perspective.

by Nicole C.

I was five months pregnant with our second son. My first pregnancy was normal and I was just trying to survive through this one to “complete our family” as my husband put it. Little did I realize how much I was taking for granted. During our routine 20-week ultrasound, my OBGYN found a slight umbilical cord issue. It took me three weeks to get in for my routine Level II ultrasound that quickly spiraled into our worst nightmare.

Once the extensive testing started, each result brought a worse prognosis. First, the significant VSD (ventricular septal defect) was causing our baby to have congestive heart failure, requiring open heart surgery soon after birth. This turned out to be the “best” issue we had. In addition to the heart defect, our baby had life-threatening anomalies that would require multiple, immediate surgeries attempting to reconstruct a missing esophagus, detach the stomach from the lungs, create a colostomy, create a missing anus, and correct severe spinal deformations.

Only his brain was normal, but after the extensive surgeries and amount of time in the NICU, he would be expected to have severe learning disabilities. There is no known genetic or environmental causes of his severe VACTERL (an abbreviation for vertebral defects, anal atresia, cardiac defects, tracheoesophageal fistula, renal anomalies, and limb abnormalities.) diagnosis and all genetic testing came back normal. I was told this is a fluke, a 1-in-40,000 fluke. My beloved son would’ve suffered every minute he was on Earth. Once my baby was born there were no protections or “comfort only” measures. He would have been taken from me and then likely died scared, alone, and in extreme pain.

When you get a prenatal life-threatening diagnosis, your life becomes an unbelievable shadow of what it once was. I was hyper aware yet completely disconnected. During the two weeks of fetal testing (echocardiogram, fetal MRI, amniocentesis, multiple ultrasounds, and specialist/genetic counselor appointments) I had zero sense of smell nor taste due to the effects of the stress on my body. I had bone-aching sadness that I’m convinced only a mother knowing her child will die can possibly feel. Nothing could have prepared me for this, it was a complete shock and the worst outcome possible.

We thankfully were able to travel to Washington D.C. for the abortion at 26 weeks pregnant. The procedure was painful but I am healthy and grateful to not have put my son through everything he would have endured. Here are a few of the messages I continued to tell myself that helped me get through:

  • This is a blessing. Whatever your religion or belief, there is a higher power that gave me the knowledge I didn’t know I needed so I could make the hardest decision of my life. VACTERL would’ve robbed my son of any quality of life. At every specialist appointment and during the abortion, I repeated to myself that I was thankful for the ability to make a decision. Some parents are not as fortunate.
  • Make a list of everything you are grateful for and repeat it constantly. We have so much abundance in our lives, this gave me a new perspective and taught me what’s truly important.
  • I didn’t think of this decision as abortion vs. a healthy baby; that twisted the truth. My baby was very sick, and my pregnancy would never be normal again. I was to start twice-weekly amniotic fluid pulls, non-stress tests, and ultrasounds along with steroids and medications to prevent me from naturally miscarrying. Modern medicine is a blessing but also can be a curse.
  • I shared my story. The burden was too great to bear and there are so many misconceptions about abortion. I found relief and healing in sharing my story, and I joined NARAL.
  • Remind yourself why. The easy way for me was to let the specialist team try everything and remove myself from any guilt by continuing the pregnancy. I chose this path out of love, and I would choose it again.

It was devastating, but we never wavered in our decision. Mamas that go through this are strong…and our babies are strong. My body and my baby fought until the end…a fight that my sweet baby could not possibly win. I could give peace or I could give life, and I chose peace. I hope you trust in your ability to make the right decision for your child. Give yourself time to heal. The crying will lessen and this beautiful life will go on…and it’s supposed to. My baby is safe and loved and I’m so thankful I had the opportunity to protect him from the cruel, short life he would have lived.
If you have read this far, thank you. I believe in you and I’m praying for you.

 

 

Photo by Ray Hennessy on Unsplash