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The birth of a baby is often filled with anticipation and excitement. The birth of our son in June, 2011 was laced in fear and anxiety. Our son was diagnosed at 17 weeks gestation with a genetic condition called Trisomy 18.

Trisomy 18 occurs in approximately 1 in 2500 pregnancies. Almost 70% of unborn babies diagnosed with this condition are stillborn, so 1 in 6000 babies born have this diagnosis. The babies born living only have a 50% survival rate at 1 week of age and only 10% will celebrate their first birthday.  Of those that see their first birthday, 60-70% will also live to see their 5th.

We prepped our entire pregnancy for the potential loss of our son after receiving his diagnosis. We were told that his condition was "incompatible with life". We were highly encouraged to sign Do Not Resuscitate (DNR) orders when we received his diagnosis. Our doctors also did not want to perform a cesarean section (c-section) if our son was showing signs of distress during labor. We were lead to believe that we would not get to spend a lot of time with him alive. We decided early on that we wanted him to be with our family as much as possible. We wanted his two big brothers to know him. We wanted our memories to be filled with him in our family home. Consequently, we opted to put our son on Hospice when he was born.

The final doctor appointment before his birth increased our fear about whether or not he would even be strong enough to live through labor. His heart had begun to skip beats. We were told that this could be his heart giving out, or it could be my placenta getting old. We opted to induce labor the next day. We wanted every chance to be able to see him alive. We wanted his brothers to hear him cry. We wanted time as a family.

We left our home at 7am on the day of his birth. We dropped our boys off at a family member's home. They had a suitcase full of special stuffed animals, clothes, and a special note from mom and dad.

The drive to the hospital was terrifying. Our son had been safe and alive inside of me for 9 months. The fear of what that day would bring overtook me. I screamed. I cried. I prayed. I begged and pleaded that we would get to spend time with him alive. I wanted our son to know how much we loved him. I wanted his brothers to know him. I wanted a miracle.

We arrived at the hospital, got checked in, and we prepared for induction of labor. This was not our first induction; all three of our boys before him had been induced as well. We knew from experience that my body handled just breaking the amniotic sac (bag of waters) to induce labor. We had opted for this type of induction again. We wanted to put the least amount of stress on our son as possible. My water broke around 9am. We anxiously waited the 45 minutes I had to stay in bed. I then got up and started speed walking. It was a relief to move and focus on something other than the potential death of our child.

The contractions began and progressively got stronger and more frequent. We took breaks from speed walking to check on our son’s heartbeat. Each check he continued to be strong and handling labor well. We utilized different activities and positions to assist with contractions. Our labor progressed to the phase before delivery (transition). I was getting tired. For 23 weeks my anxiety and fear was on this moment and the days ahead. I was worn out from being scared. I was worn out from fearing what was going to happen. I was physically tired from not sleeping. I was exhausted from labor. I remember thinking with my other labors that I wanted it to be over, but I really meant it this time. I remember saying "I need this to be done".

Our son was so much smaller than his brothers that I was having a harder time progressing in labor. The nurse assessed my progress, and this action was enough to send me into delivery. The nurse rushed to page the doctor, but it was too late. Our son slipped into this world and was quickly caught by the nurse. Our doctor arrived 3 minutes later.


There was a lot of commotion in the room and I did not hear him crying right away. I cried as I asked if he was breathing. And then I heard it; the sweetest sound any mother could hear; his soft beautiful cry. They handed him to me and I held him to my chest. Tears flowed. I kissed him and told him that I loved him. His dad kissed him and said the same. He was alive. He was breathing. He was here.

Family and friends by the dozen came in to see him. We had a photographer planned that came and took pictures of him and our family. We baptized him in the hospital chapel. I marveled in his beauty. I did not sleep that night. I did not want to miss any moment of his life. I was so tired, but I knew I would regret missing anything. He stayed skin to skin with me all night. I wanted to capture everything; his sweet smell, soft skin, fuzzy hair.

The days and weeks to come would be challenging and filled with sleepless nights, watching him turn blue multiple times, and tough decisions. Looking back on that time now as I watch our now three year old son smile and play gives me even more appreciation for what we went through. He showed his true personality from birth; a stubborn warrior.

Terra Garst

Terra has lived in Omaha her entire life with her husband and four sons. She enjoys being a stay-at-home mom and driver for all her children's events. She is a nurse and uses creativity to get things done! Terra is Nebraska's state chapter chair for Support Organization for Trisomy 18, 13, and related disorders (SOFT) as well as their prenatal outreach contact. She also volunteers for Hope for Trisomy. ...

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