Diagnosis Stories – Erin and Fenton.

​’May 2016, we received that phone call.  That one call that literally shattered and rocked my world.  Our sweet baby boy was showing 4 markers for Trisomy 21 (Down syndrome).

It really was not a phone call I was expecting. With the four markers and my advanced maternal age, we were encouraged to see a specialist.   He is our 6th baby, all other pregnancies were simple and without incident.  I remember hearing lots of terms being read to me over the phone from the radiologist report, although I hung on to every word I was in a fog and cloud while the results were being read to me by our midwife.  As I hung up that phone I thought, “Really? This news delivered over the phone.  This life altering news told to me over the phone, as casually as possible, like my order for food was being repeated back to me.”  I got off that phone, collapsed and I cried.  I felt like I had entered a terrible dream and was hoping to wake up.  My mom was the first to find out along with other family.  There wasn’t joy or smiles in their response only sadness and worry.  That broke my heart even more. 

God is good, not soon after this initial news, we were put into touch with some amazing moms who also have their lucky blessing, a child with Down syndrome.  I remember one mom in particular whom I met.  I saw her sweet daughter with Down syndrome playing. She happened to be visiting that church we were attending,  I came right up to in the cry room where our little ones were, and told her that my sweet boy had been diagnosed with Down syndrome. I broke down and cried.  She stood up without a word and just hugged me.  That moment,  that action, was a moment of healing for me. Through that action there was communicates a profound sense of ‘I know exactly what you are going through’.   She then looked at me and smiled and said “Congratulations. I know it doesn’t seem like it right now, but you will have more joy then you ever knew you could have with this little one.”   Congratulations?  What. I haven’t heard that word yet.  Only looks of sadness and sorrows for the child I carried.

 We geared up for our first visit with the Maternal Fetal Medicine Clinic.  I had heard those awful stories of specialist who pressured termination following diagnosis.  I just didn’t want to have that conversation, I didn’t want to go there.    This specialist was amazing. He was so encouraging.  The genetic counselor was compassionate and gave us a ton of resources.  We went with the cell free DNA test to help confirm the ultra sound findings.  Since we were a little over 20 weeks at that time the amino might have been too risky. 

Our second visit with him, I told him that I dread these appointments with him because his job is to find something else wrong with my baby.  It isn’t a very stress free occasion for me.  He looked at me and smiled.  His response was unexpected.  “Let me just say, I’m glad to see you back.  I don’t see a lot of parents back for the other visits.  Your baby is precious and beautiful and I can’t think of a better family for him to be born in.   Your little one is going to be just fine.  I look forward to seeing him prove others wrong.”   So profound to me. It rocked ny world in a good way.  

Since then, I have met some amazing people in the Down syndrome community.  They are all so loving and have reached out as support to our family in ways I never dreamed.  A new friend took maternity pictures and has offered to be a support doula at our birth.  Moms have PM me and told me their birth stories.  Some will just check in to see how I’m doing.  

Our 4h club threw me a surprise baby shower.  They are all so excited for the birth of this sweet boy they can’t wait.  While some in our lives remain silent, still sad or distant, we have friends who are celebrating this boy.  Celebrating a uniquely beautiful life.  My OB on our last visit smiled and got excited about his upcoming birth day.  She told me she has her running shoes on and can’t wait.  We have been blessed.  I love that our boy will be born in October, which is Down Syndrome awareness month. We can’t wait to lay eyes on you and welcome you into our family. You will be loved and cherished always sweet boy.  

For those moms and dads who’ve just received  the same news we did, you are not alone. Your journey has just begun but it will be an  amazing one filled with all kinds of emotions and new friendships you will make along the way. October 16 is his due date.  Our fear and yes our sorrow has turned now into complete joy with anticipation of meeting this sweet boy, who has already blessed our lives.  I can’t even begin to imagine how much more blessed we will be once he arrives earth side.’

UPDATE: Fenton was born 2 weeks early on the 2nd of October, 2016. I chose to continue with my plan to publish Erin’s diagnosis story on today, the 16th and Fenton’s due date. Congratulations Erin on the birth of your gorgeous boy! 

Erin has updated as follows:
‘Let me also add, now that he is here, all that fear and worry I had had melted away, and has only been replaced with a love so deep that even words aren’t adequate in describing this strong connection and love I have for him. He is not a baby with Down Syndrome.  He is Fenton, my baby our sixth child who is beautifully and wonderfully made.’
Erin – Fenton’s Mum.


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