Darby Skibington
Born: September 12, 2006 in Calgary, Alberta, Canada
Diagnosed: June 2007Darby is our second child. She was a full term pregnancy with no complications throughout and two clear ultrasounds. I did get migraines throughout the last 6 weeks of the pregnancy but nothing else differed from my first pregnancy. My first child, Grayson, is a rambunctious, chatty, healthy almost 3 year old who loves his sister.
Darby’s condition or what we called her ‘quirks’ were a complete surprise to my husband and to all who cared about us. The birth experience was ‘normal’ after being induced because Darby’s head was not moving down. I pushed for a short time and because her heart rate was around 100, we had a Neonatal team in the delivery room, just in case.
Darby came out BIG, really BIG- 9.9 lbs and quiet. They were able to get her breathing pretty quickly with a little stimulation but it was obvious that she was unique. She was very swollen. Her APGAR scores were good after 5 minutes but she was already rushed to ICU by then and we were told that she had multiple abnormalities. The next few hours were a blur, filled with tears and much anxiety.
I finally got to hold her in ICU and she looked better. She had a ‘draw and exchange’ done to stabilize her blood sugars and she wasn’t so swollen.Among Darby’s first noticeable abnormalities were her bilateral cleft palate, hypertelorism, polydactyl on her feet, displaced anus and what was referred to as ‘coarse facial features’.
Despite all of this, I breastfed and pumped everyday and she worked very hard for suction. She had an NG tube put in for meds, etc and so most of her breastmilk was fed through her nose.
It was still nice to ‘bond’ as the post birth experience had been traumatic. Darby was given a brain MRI within the first few days of her life and there were abnormalities as well including abnormally wide fissures, an absent septum pellucidum, cortical dysplasia and her corpus callosum was not attached posteriorly. This was a lot of information to take in when we are still in the ICU/Special Care Nursery and more tests were to come.
We got to the point where we dreaded any testing and longed for something to come out positive. The positive came 13 days afterwards when Darby got to see the sunshine for the first time and come home. She continued on her NG tube until November when we decided to try to feed with just the Mead bottles and then eventually the Haberman feeder. We have not been back since!
Darby’s first surgery to fix her displaced anus came in November. The surgery, although very stressful, was a success but we were now heading down the road to constipation for the next 15 years. I felt comforted that she would not remember it at the tender age of 8 weeks and she was a trooper!
Cleft palate surgery was scheduled next but not for some time.We started to see the Infant Development Team soon thereafter for Darby’s delays as she was still not smiling or experiencing facial recognition or holding her head up. Our physio and OT were fantastic but the progress was slow despite a lot of ‘working out’ at home. Her delays were noted as significant and even at 10 months her little head continues to wobble.
Diagnosis day came some time after this and we knew as soon as we saw the kids on the PKS kids website that our Darby was a new member. The cheek swab test came back days later with a positive on chromosome 12.
Feelings were mixed but the heartache was unbearable. Who thinks they will have an unhealthy child? Let alone one that may not speak, eat normally, walk, hear or see? We eventually came to terms with it and know that the road ahead is going to be long. Even after 10 months I find myself waiting to wake up from this. ‘One day at a time’ everyone keeps saying…Today, at 10 months, Darby is in the 50th percentile for height and weight and pretty easy going.
Her severe sleep apnea is a daily issue as well as her constipation and solid food struggle. Otherwise, she enjoys water and cuddles and her big brother.
We still have an amazing team of physios, OTs, dieticians, doctors and family to help us take this road.I know in my heart that there was a reason for Darby choosing us and I am OK with not knowing it right now. She has made me and my family a stronger unit and opened my eyes to a world that I only saw in ‘other people’s kids’. I still get sad some days but I let myself feel and then move on.
If you are reading this and have just received the news that your child may possibly have PKS, you are not alone. That child chose you because you are strong. Ask for help from everyone and allow yourself to feel.
If you would like to talk to someone who’s ‘been there’, please e-mail me at tskibington@yahoo.ca