Gracie and her twin brother Judson

Our family was thrilled to find out when I was nine weeks pregnant that we were having twins.  At twenty weeks, we all went to watch an ultrasound.  The excitement quickly turned to fear when the doctor told us we were having a son, who seemed healthy, but our daughter had a heart defect and her amniotic fluid was low.  These two discoveries led her to believe our daughter probably had a chromosomal disorder with possibly severe anomalies.

Throughout the rest of the pregnancy we watched our twins – our son who was developing perfectly, and our daughter, whom we had name Grace, who was struggling to gain weight.  The doctors had discovered additional problems; Grace had only one kidney and probably spina bifida.

The doctors asked us to make a decision as to what we would do if Gracie went into distress.  To deliver at that time would put our healthy twin at risk and give Gracie, whom they expected to live only a few hours or days at the most, only a few more hours to live.  We could choose to allow Gracie to die in utero and give our son a better chance to survive by continuing the pregnancy.  We knew Gracie's life was as precious as our son's and to choose between them was unbearable.  We prayed desperately for wisdom. 

God answered by allowing me to go into labor at twenty-nine weeks.  I was in the hospital for three weeks and was sent home for bed rest on a medication that kept the contractions at bay.

We planned a C-section for December 28.  We had made it to thirty-eight and a half weeks!  We delivered two beautiful babies.  Judson was “perfect” as the doctor put it, and our sweet Gracie, who was also perfect in our eyes!

Gracie was immediately sent to the NICU (neonatal intensive care unit) for tests.  She had several heart anomalies and one kidney, but no spina bifida, she was breathing on her own and she was hungry!  The doctors told us later that day that Gracie was trisomy 13, a disorder of the 13th chromosome.

For two weeks we made trips back and forth to the hospital.  Then, one morning we received a call saying that Gracie's body oxygen level was falling.  This was a sign that her heart was starting to fail.  The nurses said we needed to take her home and spend family time with her before she passed away.

We brought our precious baby girl home along with the oxygen machine, her feeding machine and a monitor that recorded her heart rate and oxygen level.  When we got her home, Gracie's body oxygen level evened and she did great!  We hugged, cuddled and kissed her for five months.  Although she did not do all the things her brother did, she was alert and knew when she wanted to be held.  She loved to snuggle with us.

On June 19, 2004, when Gracie and Judson were 5 ½ months old, God reached down and lifted our precious baby girl to heaven.  Although we miss her and still hurt from our loss here on earth, the time we spent holding her is precious to us.  We talk of her often and tell Judson about his beautiful sister while we look at her pictures.  She was a gift to us and we will always treasure the memories we made while Gracie was with us.

Back to Trisomy 13 Stories

-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.