Diagnosis Stories – Jody and Flora.

Flora was born around 1:00 am. Right away when the midwife gave me the baby, I mentioned to my husband that her eyes looked “funny” but no one else said anything about it, so I assumed she was just puffy from the birth. The nurses checked her over, cleaned her up, and let me breastfeed (Flora did great at nursing!) and cuddle her. We were completely smitten with our new baby, and I just couldn’t believe how tiny she was! (Flora weighed 6 lbs, compared with her sister who was nearly 10 lbs at birth!) Later the nurses took her to the nursery so I could get some sleep. 

The next day our older two daughters and my mother-in-law came to see the baby and have lunch with us. It was so much fun to see the girls interact with Flora–everyone was so excited about her arrival! Around 3:00 or 4:00 in the afternoon the pediatrician came by to see us and check Flora. As far as we knew, this was the first time she was being seen by the doctor. As he examined her, he asked us, “Do you notice anything about Flora’s features?” I said, “Yes! She looks so much like our oldest daughter when she was born!” He continued to examine her and he asked, “Have you ever heard of Trisomy 21, or Down syndrome?” I thought of her “funny eyes” and my heart completely sank. I honestly don’t remember what he said next, because I was in shock. 

The doctor very gently pointed out to us the features he saw that indicated DS (the shape of her eyes, her small size, her low muscle tone, and the crease that went across her palms). He said that they would do testing to be sure that it was T21, but he was pretty sure. I started to cry, and he gently asked me, “Why are you crying?” I said, “Because those kids have such a hard life.” He said, “The picture you have of DS may be very outdated. Now, children with special needs have a very high quality of life. They go to school, they have friends and family who love them, they get jobs, they do things independently. I have had several patients with DS and I don’t think they would say their life is hard.” He went on to talk briefly about DS and he never once said anything negative about it, other than that there were some medical risks we would have to check for. He said he would leave us alone, but he would remain available at the hospital for the next couple of hours if we wanted to talk to him more. 

The entire nursing staff were exactly the same way. Everyone was very sensitive to our feelings of shock and grief (which would little by little give way to complete acceptance and love for this sweet little baby!). Our nurses told us about friends they have who have an adult son with DS and another nurse who has a sister with DS. One nurse also told us that the pediatrician had examined Flora early that morning and made the DS diagnosis at that time. He would have talked to us right away, but he had a very tight schedule that day, so he instead opted to come back at the end of his work day to meet with us so that he would not have to rush through the conversation and so that he could be available as long as we needed him.
The day we received our daughter’s diagnosis was probably the most emotional day of my life. I am so thankful to the amazing hospital staff that we had, for presenting the news to us in a gentle and positive manner and for giving us some time to just enjoy our baby without immediately worrying about her diagnosis.  I feel like it’s important to share, since most of the diagnosis stories I hear are pretty negative. I really appreciate the approach our doctor and nurses took!
Jody -Flora’s mum.


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