An Update to “Terminal Diagnosis/Precious Life”

By Mary Kay Culp, Executive Director

Editor’s note. The following powerful story comes from Kansans for Life.

Ella Rose

Earlier this year in this forum we discussed the issue of babies with special needs, and many Kansans for Life members expressed beautiful sentiments about the issue.  In early March I met Terisa Morgan when she was 8 months pregnant with Ella Rose.  Little Ella Rose Morgan was born late the afternoon of Easter Monday, April 9, 2012.  Just like her ultrasound picture predicted, she is as pretty as can be. Rose has Trisomy 18, the same syndrome Rick Santorum’s 3-year-old daughter Bella has.

I urge you to read mom Terisa’s story below, written at our request. 

She and her husband Cory have inspired us all with their beautiful witness in welcoming little Ella Rose as a gift from God Himself.  The road may not be easy but they have placed their faith in God.  Please pray for them and for their precious Ella Rose. The Morgans live in Lenexa but Terisa has family in Wichita as well.

I became aware of Terisa through my daughter who is a fellow young Mom at Holy Trinity Catholic School in Lenexa, Kansas.  When I was offered a chance to be one of 15 people to meet Rick Santorum prior to his appearance in Lenexa in early March, my daughter suggested I invite Terisa to join me, and I am so thankful she did!  

Terminal Diagnosis/Precious Life

By Terisa Morgan, Lenexa, Kansas, March, 2012

Morgan Family

My name is Terisa Morgan.  My husband and I have been married for 12 years and have been blessed with 3 beautiful children, Alexa, 10, Chloe, 6, and Noah, 4.  We learned in August, 2011 that we were expecting our fourth child.  We were elated, and when we learned the baby’s due date was on Easter of 2012 we thought it a very appropriate date for new life.

The pregnancy was uneventful with the usual fatigue and nausea, but by the second trimester I felt great as Christmas and our routine ultrasound approached. I had previously been offered tests to check for genetic abnormalities like Down Syndrome (Trisomy 21), and worse, but less common genetic abnormalities like Trisomy 18, 15 and 13.  We declined, knowing that such a diagnosis wouldn’t change how we would progress with our pregnancy.  We knew early on that we could never choose to end our child’s life at any stage of pregnancy.

However, during the ultrasound some concerning features were identified prompting our doctor to send us to a perinatologist for an in-depth ultrasound the next day.

Soon we learned that our precious baby girl had Trisomy 18 and were informed that although a few children do survive, this diagnosis typically is incompatible with life and that less than 10% of these babies survive their first year. Our options were laid out before us: terminate the pregnancy or continue to birth. 

I was 23 weeks along when the diagnosis came and we were devastated.  We were told of Alexandra’s House, a Perinatal Hospice for Infants offering support to families experiencing a pregnancy in which the baby has been diagnosed with a terminal illness. Alexandra’s House has provided us with loving and compassionate support as we await the arrival of our Ella Rose. 

We reached out to our family, friends, and church community. The prayers, meals, cards, emails and calls poured in and we were surrounded by Christ’s love and an overwhelming sense of His peace.

Several people recommended different books that could offer us support, but one book in particular, Letters to Gabriel, by Karen Garver Santorum was the one book people recommended repeatedly. Then, a mom from our church reached out  with the story of the loss of her beloved baby.  She said that very book offered her much comfort following her loss, and lent me her copy. 

I will never forget the night I first opened the book.  I was immediately struck with an overwhelming feeling of guilt as I began to read about when Mrs. Santorum learned of her pregnancy with Gabriel, how she was in full contemplation, rejoicing and praying over the miracle of life within her.

After having three healthy children and living our busy lives together, I had somehow lost the appreciation I once had for the true blessing of pregnancy and new life growing within me. Yes, I was happy to be expecting our fourth child, but I was not fully recognizing our baby in daily prayer and contemplation.

I was so affected that initially I didn’t think I could read on, handing the book to Cory with tear-filled eyes and confessing myself to him.  He helped me decide that I could and should go on reading.  So I continued and was so blessed by the Santorum’s story.  I was not only reminded of how infinitely precious every human life is, but I was given a new sense of courage and hope.

The Santorum’s fought for their precious Gabriel’s life. Their fight inspired me to learn all I could about our baby’s diagnosis, and to find ways to help her and fight for her life if needed.  Their story inspired me to hope after being told  there is no hope, and that even if life is cut short and tragedy comes, there is still that life and that blessing to celebrate, reflect upon and thank God for—that all is not lost.

And so, we have spent the remainder of this pregnancy celebrating the life we’ve been blessed with in Ella Rose.  We built her a bunny at  Build-A-Bear. We’ve seen her beautiful face, hands and feet in 3D/4D images.  We’ve had maternity photos taken. We’ve shopped and made a nursery for her. We sing to her, talk to her, love on her and do we ever pray for her!

Some friends we made through Alexandra’s House had bracelets created for us with her name and the Scripture from Matthew 18:5 printed on them. Another friend is preparing her baby book.  We were gifted with the most beautiful linen baptismal outfit handmade especially for Ella Rose, complete with delicate embroidered pink roses. 

The gifts for Ella Rose have been especially meaningful to us as they strengthen within us our sense of hope and appreciation for her life, regardless of her diagnosis.

We’ve been blessed and gifted by this precious child and reminded how fragile life is. We’ve been made more keenly aware of the dignity of every human life from  conception to natural death. Ella Rose has shown us that we must slow down and appreciate all of God’s gifts for as long as we have them.  And most importantly, our family has drawn closer to Christ as we put all of our trust in Him.

Although we realize that the statistical odds are not in Ella Rose’s favor, and we have taken steps to prepare ourselves for losing her, we have not lost our ability to hope.  We are praying for a miracle for her if that is God’s will, but that if it is not His will we know that He will give us the grace, love and support we need to persevere.  And even if we do lose our baby, hope remains in the promise of eternal life with our Heavenly Father, where someday we will all be together again.

The photo of Terisa with Rick Santorum is available at www.kfl.org/SiteResources/Data/Templates/FileViewerLayout.asp?docid=1393&DocName=Ella%20Rose%20Morgan along with information about how to order Karen Santorum’s book (recently back into print) that so inspired Terisa.  Also there are links to the two perinatal hospice organizations we are blessed to have here in Kansas: Alexandras House in KC and Choices Medical Clinic in Wichita.

Follow Ella Rose and sign her guest book at the Caring Bridge web site at www.caringbridge.org/visit/babymorgan.