“Mrs. Seaver, the Genetics team really needs to speak with you.”  I had heard this several times that day while visiting with my daughter in the NICU at Boston Children’s Hospital.  I knew they wanted to meet with me, but I was waiting for my husband and my father to arrive at the hospital.  We were supposed to meet with Renee’s team to discuss moving her back to the hospital where she had been born to get her a little stronger before taking her home.  I finally relented and told her nurse to arrange the meeting, and I would inform my family about whatever it was they wanted to tell me when they arrived.


I was ushered into a conference room filled with doctors, nurses and social workers all looking at anything but me.  Not a good sign.  “Mrs. Seaver, we want to explain to you our findings of Renee’s blood work, “ began the young sacrificial lamb from the Genetics team.  “Renee has been found to have a condition known as Partial Trisomy 18.”  My world began to tilt and slide off its axis as she droned on about chromosomes and other medical jargon that made little sense to me.  I heard nothing more of what she said because all that I knew was she had delivered my daughter’s death sentence.  I knew there was a possibility that Renee had Trisomy 18 or Edward’s Syndrome based on findings that came up during my pregnancy, but we had thought that had been ruled out. We continued with the pregnancy and now here it was back in full force to steal my baby away. 

After delivering her horrible burden to me, the doctor asked me if I had any questions. Hmmm, well let’s see, you’ve just told me that my child won’t likely see her first birthday and there is nothing that can be done to correct this problem.  Nope, no questions here!  

At this point my husband and dad came into the room to see me a sobbing wreck.  The look on their faces will haunt me to the end of my days, as they rushed over to me and wanted to know what had happened.  I didn’t have the words to tell them what I had been told, to crush their hopes as mine had been.  The team was reassembled and we went through it all again.  My dad left the room to call my mom and let her know that he was coming to get her from work so she could be brought up to speed on what had happened.  

We all reassembled at Renee’s crib side a while later, and as we watched her sleeping peacefully, it was hard to fathom that this sweet little angel would not likely see her first birthday.  In just under six weeks of life she had already survived surgery to repair her EA/TEF (basically a malformation of the connection between the esophagus/trachea and stomach) and then open heart surgery.  She’s so strong.  How could she not live?  

At one point, a nurse practitioner, who had been up to that point a very strong positive part of Renee’s team, came up to us and in the course of conversation said to me, “I know you have to go back to work in a few weeks so you could always look into long term care for Renee.”  What?  I am still trying to wrap my head around the facts that you all just dumped on us, and now you want me to give her to other people to care for her for however long she may have to live?  I mean no disrespect to any family that has made the horribly difficult choice to place a loved one into the care of a facility, but I could not bear the thought of doing that unless it proved to be unsafe for Renee to be home in our care.  It felt like another punch in the gut after what we had just been told.  

The team at Children’s made arrangements for Renee to move to a hospital closer to our home.  She spent two more weeks there, while we learned all aspects of her care prior to taking her home.  What a nerve-wracking experience those two weeks were, as there was so much more to learn than just the usual newborn stuff.  We learned how to place her NG feeding tube up her nose and down into her stomach, how to determine if her feeding tube was in the proper place, how to measure her medications, how to fix her formula and use her feeding pump, and how to use the oxygen tank and the oxygen monitor.  The day we finally took her home I cried and hugged the wonderful nurses who had cared for her and asked them if they were sure we were ready to take her home!

Fast forward over a year and a half later.  Renee is set to turn two in just a few weeks, and although life keeps throwing more challenges our way, we keep plugging along.  Friends and family ask me all the time how do we cope with the stress of Renee’s multiple medical issues, or her developmental delays.  I could give them all the typical platitudes like, “God doesn’t give you more than you can handle,” but the truth is sometimes I do feel like God or the universe has given me way more than I can handle.  I scream and cry and rage at how unfair life is for my daughter.  

Just when I think I have reached the limit of what I can handle the best thing in the world happens.  

She smiles.  


She laughs.  

She says, “Hi,” in her sweet angel’s voice.  

And I can make it another minute, another hour, and another day.  When I break down and cannot cope, I know I can turn to my husband and my parents and they take up the burden for me.  The four of us live to make our girl’s life as happy and fulfilling as we possibly can.  We each bring something unique to Renee’s life, and that is how I cope with the stress of being blessed with this extraordinary child and the challenges she brings to our lives.


For more information on Trisomy 18, see http://www.chromosome18.org/


Michelle is 39 years old, has been married for three years to her husband Billy, and has one child.  They live in MA where she works as a physical therapy assistant.