I just got home from meeting with Dr. Skotko and attending Grand Rounds with the OB’s and Pediatricans. Unfortunatly, Dr. Skotko went to the hospital we were showing the video feed of the Grand Rounds at by accident, so we had to beam his talk into the hospital we were at instead but thankfully it all worked out. I just wish I could have met him in person! Anyways, below is my speech from this morning… ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Hello, my name is Jessica Heeran. I am a stay at home mother to two beautiful children, Joey who is 2 ½ years old and Leah who is 14 months old. I am on the Board of Directors for the Connecticut Down Syndrome Congress and the chairman for The Holland Committee.
I want to thank all of you for letting me speak this morning, for Dr. Skotko coming to Connecticut to talk with everyone here and for Dr. Bob Greenstein and Chris McAuliffe for organizing this today.
I am here this morning to share with you my experience when I received a prenatal diagnosis of Down syndrome with my son, Joey in October 2005. I’ll also say a few words about The Holland Committee which is the CDSC’s newest committee.
I was 13 or 14 weeks pregnant when I went in for my first trimester ultrasound. The ultrasound technician was such a pleasant lady showing me different parts of my baby’s body when suddenly she got this look of concern on her face. She finished up the ultrasound and left the room. I laid there on the bed confused, I never expected what was about to be said.
She came back in with the doctor a couple minutes later and the doctor started doing another ultrasound. He went directly to the neck then the face. The doctor told me that my baby had a cystic hygroma on its neck and that its nose was smaller than most babies’ noses at that gestation. Also my baby’s legs and arms were both shorter than they should be and that its pinky fingers were crooked, all markers for Down syndrome.
He then proceeded to tell me that there was a 50% chance that my baby had Down syndrome, that he was sorry and that I should go talk to their genetic counselor. I was shocked, I was only 24 years old, and I never thought I could have a child with Down syndrome.
The ultrasound technician led me into the genetic counselor’s office. I sat there in the chair and waited for her to come in. Once she arrived, she advised me on getting my baby tested through CVS or amniocentesis. The CVS could be done as soon as possible, the amniocentesis I would have to wait one month to have done. She also advised me that if my baby did have Down syndrome that I had the option of terminating my pregnancy. For me that was not an option but I needed to know if my child was going to have Down syndrome so I opted to get tested through CVS.
Later that week, my mother in law and I walked into the Maternal Fetal Medicine office for my CVS. We walked back to the procedure room and waited for the doctor to arrive. When he arrived, they started out with an ultrasound to see the placement of my placenta. After the ultrasound, the doctor started preparing for the CVS. My mother in law was so shocked by the size of the needle she actually jumped up out of her chair and left me in the room alone!
I got the results of the CVS on October 5, 2005; I went into work that day like normal. Of course, most of the day was spent wondering what the results of the CVS test were going to be. That was all I could think about since I had the CVS done. I couldn’t concentrate on anything else.
Finally, 4:30 arrived and I clocked out of work and went home. I was only home for a few minutes when the phone rang. I looked at the caller id. And saw it was my OB and he was calling from his house. I knew what he was calling to say.
My doctor told me that my baby was going to have Down syndrome and that I was having a boy. And again, I was reminded of my option of terminating my pregnancy.
I was promised information on Down syndrome and to be set up with another family in our area who had a child with Down syndrome. Neither of these things ever happened.
On March 14, 2006, Joey was born and was a beautiful, healthy baby boy who just happened to have an extra chromosome. The cystic hygroma dissolved on its own and he had no other health problems. He is now a rambunctious toddler who loves playing with his little sister and getting into trouble whenever he can find it.
For me, I had a very bad experience with the medical community, nothing positive was ever told to me about Down syndrome. The main thing that upsets me to this day is that I was called at my house with the results. I wish I would have been called into the office. I was home alone when I received that call. I do want to point out that my actual OB doctors were wonderful, it was the doctors in the maternal fetal medicine department at the hopsital that were so negative. When I went to see the doctor everything was always negative and I was reminded at almost every appointment that I had the option to terminate my pregnancy. I was often told about heart defects, thyroid problems, leukemia, that my baby wouldn’t walk or talk for several years and would eventually get Alzheimer’s disease and die.
It was one of the loneliest times in my life even though I had the support of my family, and friends, thankfully I had the strength to find support and information on my own. I needed to know that there were other parents out there who knew how I felt. When I contacted the Connecticut Down Syndrome Congress, I knew things were going to be ok, I knew I wasn’t alone.
Because of the experience I had during my pregnancy with Joey, I am here to help any other new or expectant parent I come in contact with. I never want another family to feel as lonely as I did. That is why I am involved with the Connecticut Down Syndrome Congress and started The Holland Committee.
The Holland Committee is the CDSC’s new and expectant parent outreach and support committee. It is composed of parents who also have children with Down syndrome, Dr. Bob Greenstein and genetic counselors from all over the state. The parent to parent support part of the committee is made of parents who received prenatal and postnatal diagnoses of Down syndrome. We all have received training about proper talking techniques and the importance of confidentiality with these families.
Unfortunately, experiences like mine aren’t unusual. The CDSC has recently received several complaints from families about their bad experiences with medical professionals, keep in mind that these complaints weren’t necessarily from this hospital.
I do have some of our handouts we have available to new and expecting families here today for you to take with you and if you are interested in being on our mailing list, I have a sign up sheet here with me today.
I want to thank all of you for listening. Together we can make the lives of new and expecting parents easier and less stressful. It shouldn’t be a time full of grief but a time of joy during their pregnancy or birth of their new child and knowing that they are NOT alone and providing them with new and accurate information about Down syndrome.