Today marks one month since Iris was born, and I sometimes still tear up when I look at my baby.
This is Iris’s birth story.
Everyone reacts to an unexpected pregnancy differently – my coping mechanism was research and rule following.
Everyone reacts to an unexpected pregnancy differently – my coping mechanism was research and rule following. I read so many books about parenting and pregnancy; I took a prenatal supplement, I quit taking my allergy medicine, I avoided all of the food on the DO NOT EAT list, I stopped cleaning my house with harsh chemicals, I followed all of the rules for growing a human.
I did everything I was supposed to… but sometimes that doesn’t matter.
Iris was breech, and during my pregnancy research I read plenty of stories about turning your little one in utero not panning out so well and being super painful, so we waited and waited to see if she’d turn on her own and on week 38 – when she had yet to make a move we – scheduled a C-Section.
Minutes before getting my epidural the anesthesiologist asked me if I planned to do skin to skin contact with Iris – I said yes because I did everything you are supposed to do during this pregnancy and getting a C-Section wasn’t going to stop me from getting important bonding time after my baby was born.
Forty minutes later when they brought Iris over to me and set her on my chest, I was caught off guard by how she was wrapped in two towels, but a little voice in my head told me to soak up my time with my daughter and keep my mouth shut about the skin to skin contact.
Justen stayed in the OR through closing which was not what we were told would happen when our Doctors walked us through the procedure earlier that day. The plan was that Justen and Iris would go back to the recovery room to cuddle and hang out with my parents while they were closing me up. After 30 minutes with me and Iris in the OR Justen asked if he should be going back to the recovery room with her, they just said: “Oh we’re nearly done closing you can just go back to the room with Raya.”
I still didn’t think anything was amiss until we got back to recovery and my parents weren’t there and we had nearly the entire staff from the OR in my tiny recovery room. Then our doctors started talking about how Iris looked good, everything checked out, and that she was a beautiful and perfectly healthy baby girl – EXCEPT.
In that moment my heart dropped. In the seconds before Dr. T could finish his sentence I was able to filter through a handful of things that could be wrong, they found a mass, something happened with her heart or her brain. What could be wrong, but not so wrong that they could comfortably say we had a beautiful, healthy baby girl.
EXCEPT – she didn’t have a right hand.
Our doctors told us her missing hand was due to Amniotic Band Syndrome (ABS) – now where have you heard that before? Very possibly from the viral videos of Shaquem Griffin, Linebacker for the Seahawks who took the NFL by storm in 2018, and lost his left hand due to ABS meeting kids who are missing limbs, and making moms everywhere cry.
ABS is a rare disorder that happens in utero where the inner layer of the amniotic sac ruptures, leaving little fiber bands floating around. Amniotic bands occur in approximately 1 in 1,200 births and develop around the 8th week of pregnancy, but the congenital disability amniotic band syndrome effects a much smaller number, somewhere between 1-15,000 to 1-30,000. From everything specialists can tell, it’s not related to anything genetic or is it something I could have prevented. Another fun fact: about three-fourths of parents of children with missing limbs don’t find out until after their baby is born.
The more I talk to people who found out something was not as expected after delivery the more I hear that people get frustrated or angry at their doctors or their significant other and some don’t want to hold their baby. While my reaction to the news that my perfect baby girl might be less than perfect in the eyes of others was to cuddle the heck out of her, it’s important to remember that everyone reacts to these situations differently and that there is no right or wrong way to process the grief. The insane number of emotions you have post-delivery is nothing compared to finding out that the person you’ve been creating and loving may have to go through life without something.
Have you ever gotten news you weren’t expecting about your little one? How did you handle it? Do you look back and wish you’d reacted differently, did your mom instincts kick in immediately?
Update: We met with Doctors at Shriner’s Hospitals for Children in Chicago and it’s looking more and more like Iris’s had had been missing from the start due to a blood flow issue. And they mentioned that most OBGYN’s and Family Practice Doctors say ABS because it’s something they know about but gives them a bit of protection from “missing” a diagnosis since ABS can impact the baby in-utero at any point during the pregnancy.