Parents: Michelle and Jon
Hometown: Wichita, Kansas
Born at 35 weeks, lived a few minutes
Grace Elizabeth’s Story
Michelle began having health problems even before she knew she was pregnant. After visiting her doctor and being diagnosed with a serious case of hyper-thyroid, Michelle was scheduled to have a radio-active treatment. Knowing there was a chance that she could be pregnant, Michelle asked for a pregnancy test before going forward, and sure enough; she was about two weeks pregnant. Michelle was then sent to her OB/GYN who quickly referred her to a high-risk pregnancy specialist. Michelle recalls, “The specialist told me my thyroid rates were the highest he had ever seen during a pregnancy. He also told me that I would need to start to take medication. His initial diagnosis was that I had a 75% of having a miscarriage and a 50% chance of having heart failure during the first trimester. The medicine said “can cause birth defects” but there wasn’t any other option… so I took the medication and kept my pregnancy a secret.”
When she was twelve weeks along, Michelle and Jon decided to announce their pregnancy to all of their family and friends. The following week, they got some devastating news. “During the ultrasound the doctor found that the baby had a birth defect; an omphalocele. He told us at this time that 90% of babies with omphaloceles survive… but babies with omphaloceles often have heart problems also and if the baby had both their survival rate dropped to 10%. Then he said 40% of babies with omphaloceles also had Trisomy 13 or 18… which was “not compatible with life.”
“We were stunned, and completely focused on the omphalocele only. Surely our baby wouldn’t have additional problems. I was also initially horrified that the medication I had been taking had somehow caused this birth defect. Maybe I should have done more research before taking the medication. Because it was so early in my pregnancy we would have to wait 2 more weeks (15 weeks) to have the amnio and another 2 more weeks for the results. The wait was unbearable. And the day that my husband came home early I knew he was going to tell me he got the test results and they were Trisomy.”
Faith played a big part in Michelle and Jon’s ultimate decision to carry to term. “Both my husband and I are Catholic and we have always been brought up to believe that termination was wrong. However, I have always had an internal war with this subject and I have always felt that some day I would be forced to make a decision… and here it was.”
“We talked to each other, and we talked to our parish priest who mentioned that we take a long walk. It was during this walk that I finally came to realize that while termination might be the easier short-term solution for me… it wasn’t the easier long-term solution. I knew the pregnancy was going to be very difficult, but how could I deny this little life? We knew then that we would love this little baby no matter what happened and we would give her a chance to make a difference in our lives.”
Michelle and Jon decided to share the news with their children first. They also wrote letters to their daycare and school teachers so they would be aware of what was going on at their home and in the children’s lives. Slowly afterward, they began to tell their family and friends. Michelle remembers, “The reaction to the news was so very different with different people. Some cried with us. Some went on and on how doctors can perform miracles and the baby would be just fine. And others were mortified that we did not choose termination. This was very difficult for me, especially since my own mother was very much for termination and she let me know this over and over.”
At 28 weeks, Michelle was measuring full term, baby Grace was presenting with many problems. Grace had the omphalocele and heart abnormalities, and Michelle had developed polyhydramnios. Contractions had also begun to happen regularly. It wasn’t until another 6 weeks had passed; when Michelle was 35 weeks along that they decided to induce. Michelle said, “There were several reasons we induced early… I was having a very difficult pregnancy… the excessive fluid had caused me to go into maternal respiratory distress and the contractions were constant… sometimes up to 2 minutes apart. Grace was slowly failing and filling up with fluid. Our birth wish was to deliver our daughter alive and meet her before she passed away.”
Once she was admitted to the hospital, they determined that the contractions were steady at 3 minutes apart. They didn’t need anything to start contractions, so they administered medicine to help Michelle dilate. She remembers, “After that the contractions were pretty painful. After 28 hours, with 2 minute contractions I was still only dilated to 4, so they decided to drain my water, which took over an hour. Once the water was out the delivery progressed very quickly and Grace’s heartbeat started dropping with every contraction.”
“Grace was finally brought into the world 2 hours later. The cord wrapped three times around her neck and she was struggling. The nurses quickly wrapped her omphalocele and gave her to us. Her heartbeat was a mere 50 when they placed her in my arms. She moved a bit, and jumped to loud sounds… but never opened her eyes. Our children, family and priest were brought in and we had her baptized immediately. Our children held her and our family held her. Then we sent everyone away and my husband and I spent some time alone with Grace.”
Michelle and Jon decided on Comfort Care for Grace. Their wishes were that she be given an oxygen mask if needed, but no respirator, and if she survived long enough, to provide intravenous food. “We would help her live if she could survive the basics of breathing and heart working on her own. We also decided to have her omphalocele wrapped immediately after birth. We didn’t want her to surprise us with surviving only to die of an infection caused by the omphalocele. We made the decisions after talking to our doctor, our priest and many wonderful parents we met who had been through a Trisomy birth.”
Michelle recalls, “It was incredible how very perfect she was when she was born. It is amazing how a child can be “imperfect” in the eyes of the world… but be every bit perfect to a mother and father.
The Rosebud
On your journey to heaven,
Oh, littlest of angels,
I’ll forever give thanks.
You came first to our arms,
Where you lay in warm sweetness
For the briefest of moments,
Our name on your bracelet.
Baby girl of our own.
Not even the rosebud,
Nor the first crocus petal,
Could match the soft wonder
Of your small, flowering face.
Though you lingered, oh briefly,
Our torn hearts found comfort,
And your fair, infant presence
Gave our sorrow a grace.
Etched in our memories,
To hold and to treasure,
Are experiences we had not known;
These you gave, in your innocence,
To your mother and father;
And oh, little one,
We are richer by far,
To have held you a moment,
Than to never have held you
At all.
–Unknown
Michelle reflects on the blessings she and Jon found through this experience. “I am incredibly thankful to the tremendous support we received. It seems that several of my “good friends” prior to our Trisomy diagnosis disappeared and ignored us. I am sure they just didn’t know what to say. But so many new friendships were formed. Through the online community I followed along with 5 other Trisomy pregnancies due close to our Grace Elizabeth, and I formed a wonderful and life lasting bond with two of those women. All six of these babies earned their wings within three weeks of each other, with Grace being the last. It was comforting to know that others were going through the same grieving process as us. These little angels are Laurence Michael (4-14-02), Kathryn Rachel (4-17-02), Jonah Ethan (4-19-02), Leslie Hope (4-26-02), Jessica Riley (5-05-02), and Grace Elizabeth (5-09-02). It was truly through the online community and the support I received through these women that I was able to find peace with my pregnancy.”
“While the journey has been difficult, I wouldn’t change it. It was incredibly hard to lose a daughter, but she gave us so much more… Our family is stronger, our marriage is stronger, and we are much better people… all because of a little angel named Grace Elizabeth.”
“Our faith helped us walk through this enormous tragedy in our lives… and changed the tragedy into a gift of love for our family.”