How We Found Out

Our world changed forever on Friday, February 27.  We went to UCONN Medical Center for a “routine” Level II ultrasound.  During the ultrasound we were told they were having a hard time seeing the heart and they called in another doctor to assist.  Tricia overheard the two doctors (Dr. Roque and Dr. Evans) discussing  how the “axis is all wrong” and always the engineer thought to herself “Then adjust your monitor”.  They showed us how the baby’s heart had only two chambers.  We really had no idea how serious a problem we were dealing with until they started talking about doing an amniocentesis to determine if there were any other problems with our baby.

After making a few calls we agreed to an amnio.  Tricia first requested to find out the sex of the baby, very aware of the risks involved at this point.  We were told “It’s a Girl“.

The doctors at UCONN were very honest with us. Telling us we should think about terminating this pregnancy.  Tricia got furious because this goes against everything she believes in. She could not terminate a pregnancy without living with a lifetime of guilt and “What if’s”.  She needed to know that we had done everything to save this baby.  It just wasn’t and won’t be an option.

They scheduled us for another appointment on March 16 at 9:30AM for another echocardiogram. A perinatologist, either Dr. Borgida or Dr Caroline Zelop will be there to administer the test.

We came home and cried.  Cried for what could have been. Cried for how our lives will never be the same.

Tricia’s OB, Dr. Cluett, called around 1pm.  Dr. Cluett had just come into the office to call us. To tell us that the Ultrasound was showing  No left development of the heart.  Dr. Cluett said she supported our decision to carry this baby full term and never once mentioned termination as an option.

This was the lowest of the low points for us.

Arnie made a call to Maddie Rose’s pediatrician’s (Dr. Friedman) office to find out what we should tell Maddie Rose.  Dr. Friedman requested the names of all the Doctors we had spoken with at UCONN and then offered to get in touch with her friend, Dr. Heller, who is a pediatric cardiologist at Connecticut Children’s Medical Center (CCMC).  Dr. Friedman volunteered to even go with us to the appointment to meet with the cardiologist.  We were very moved by that and waited for Dr. Heller’s call.

Dr. Heller called us around 3pm on Friday afternoon. She had been in touch with the UCONN doctors and told us they said that the baby looked perfect outside of this heart problem. Obviously we still have to wait for the amnio results, but she felt based on their conversation that Olivia’s chromosomes were going to come back ok.

She said “It is not hopeless“.  There is a 3 staged procedure that can be done to allow circulation into the lungs and provide oxygen to our baby’s body.  Dr. Heller was going to get a copy of the tape from UCONN this week (3/1/03) and review it. Once she reviews it she will get in touch with us to schedule a meeting.

We are focusing on her statement that It is Not Hopeless. We are very aware we’ve got a heck of a fight on our hands, but at least we have something to fight for.

After Olivia was born, I sent Dr. Roque a letter. You can read it Here.  I plan on sending him letters after each heart surgery and on each birthday.  He has also been added to the Little Hearts newsletter mailing list so he can read about how there IS HOPE for all children with CHDs.

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