Letters to Roque

These are the letters we have sent to the doctor at UCONN who told us to terminate the pregnancy.

Letter #1: Sent in August, 2004


Dr. Henry Roque
UCONN Health Center

263 Farmington Avenue
Farmington, CT 06030

 

Dear Dr. Roqué:

On February 27, 2004 my husband and I saw you in the UCONN office for a level II ultrasound. During this visit, you diagnosed our unborn daughter with single ventricle disease and told us to consider termination. When I explained to you that termination was NOT an option you pushed the issue, throwing statistics at us. We walked out of that appointment feeling as if had I been pregnant with a perfectly healthy baby and chose to terminate, we would have met less resistance from you. You did not respect my husband’s and my beliefs at all.

We chose to ignore your suggestion of termination and on July 19th I gave birth to a beautiful healthy baby girl. She has a heart defect, however, it is COMPLETELY correctible. She had her first surgery at one day old and was home within 8 days of birth.

We were lucky enough to be put in contact with the cardiology group up at Connecticut Children’s Medical Center who gave us HOPE for our daughter. And for that we are thankful. Every time we stare at our daughter’s beautiful blue eyes, we are thankful for that hope. You gave us NONE.

I’ve enclosed a picture of the child you told us to terminate. I hope you’ll remember her next time you encounter another couple in the same predicament as we were and think before speaking about something you know very little about.

Arnie and Tricia


Letter #2: Sent December, 2004 Dear Dr.Roqué

On February 27, 2004 my husband and I saw you in the UCONN office for a level II ultrasound. During this visit you diagnosed our daughter with single ventricle disease and recommended we terminate the pregnancy.

We chose not to terminate and now have a beautiful almost 5-month-old daughter. I thought you might be interested in knowing how well this baby is doing. Her name is Olivia Ann. She is the apple of our eye and the light of our lives. She has met every developmental milestone to date even after having had three surgical procedures in her short 4 months on this earth.

Olivia had a Central Shunt put in by Dr. Mello at age 1 day old at Connecticut Children’s Medical Center. She has gut malrotation and we chose to have the LADD and appendectomy procedure done prophylactically at 6 weeks of age. Most recently Olivia had the Glenn procedure done on November 16, 2004. Olivia has only spent 18 days in the hospital in total for all three procedures (8 days for the shunt, and 5 days each for the LADD and Glenn).

Please think of Olivia when you come across another couple that is in the same predicament as we were and refer them to the cardiologists at Children’s Medical Center before suggesting termination. There is hope for these children and they mostly do extremely well.

We’ve enclosed a picture of Olivia taken on December 10, 2004.

Arnie & Tricia


Letter #3: Sent August, 2005

Dear Dr. Roqué:

Olivia is one year old! And what a year it’s been! She has been through a lot and has flown through it all. Olivia has proved every naysayer wrong!

Olivia had three surgeries this past year at CCMC: Two heart surgeries (the BT Shunt at 42 hours old; Glenn procedure at almost 4 months old) and the LADD procedure for gut malrotation and an appendectomy at 6 weeks old. She spent a mere 19 days in the hospital in her first year.

Olivia has hit every developmental milestone. She sat up and crawled on time. She was walking by 12 months. She babbles up a storm and has even been heard saying phrases like “Hi Dad”, “I want ice cream” and “I don’t want to”. More than one person heard these phrases so it’s not just a bragging mom thing.

In May Olivia took her first trip to Disney World. It was a week filled with magical moments such as Olivia kissing Minnie Mouse’s nose, trying to eat Goofy’s whiskers and Olivia’s first hair cut. Does she have a good quality of life? We sure think so!

Olivia was 20 lbs and 28 ½” long at her one year checkup. That puts her in the 25th – 50th percentile for both height and weight, which shows us that her heart has allowed her body to grow as her genes are dictating. And to disprove the theory that she’s on the “small” side, our older daughter weighed 21 lbs and was 29” tall at one year old. Practically the same size!

Just as a reminder: You diagnosed Olivia in utero at 18 weeks with congenital heart defects. Her full diagnosis is Asplenia syndrome with dextrocardia, Common atrium, Common AV valve, Single ventricle (left ventricle present, underdeveloped right ventricle), Transposed great vessels with pulmonary atresia, Abdominal situs ambiguous and finally gut malrotation.

You strongly recommended termination – and we didn’t listen. And every morning I wake up and thank GOD we didn’t. Please remember Olivia and her story. The survival rates for children who have the three stage surgeries are in the high 80% – NOT the 50% you told us that fateful day.

I’m enclosing a picture of Olivia taken August 6, 2005. I would say she’s thriving – wouldn’t you?

Sincerely,

Arnie and Tricia
Daughters Maddie Rose & Olivia Ann

3 thoughts on “Letters to Roque

  1. Everytime I read these, I want to write our own letters to the genetics counselor who treated us much like this doctor treated you. It’s infuriating! I’m so glad you send him a constant reminder that he should think twice with other parents he will encounter – Olivia is a beautiful, thriving little girl!

  2. Hi Arnie & Tricia

    We as a family are also so grateful that we did not listen to the genetics specialist we were referred to.
    We were advised by several different doctors to terminate when our daughter was diagnosed with Spina Bifida at 20wks.
    I have taken her back to these doctors and also keep them updated via e-mail. However I still need to
    Find the right words for the genetics specialist… I am hoping to do so by our daughters 1st birthday.

    I thank God every day for our angel, she is nothing like the diagnosis we were given.
    You can view her story on benotafraid.net under Spina Bifida stories.

    Much love to you all,
    Melinda, proud mom to Abigael Hannah, born Sept 11, 2009

Leave a Reply