Elizabeth’s Story

According to the Fetal Hope Foundation, “Fetal distress and syndromes affect 800,000 pregnancies per year in the US alone. This is four times the amount of cases per year as breast cancer. We lose more than 200 babies a day to fetal distresses and syndromes.” Our son Evan is one of the 200 babies who died on June 19, 2007. He and his identical twin brother, Owen, suffered from Twin to Twin Transfusion Syndrome.

I have always wanted twins…not just twins, but identical twins…not just identical twins, but identical twin boys. Our twins were ‘discovered’ at a routine 8 week ultrasound. Because a dividing membrane was not apparent, we knew from that point that our babies were identical. I was certain they were boys, although I wouldn’t find out for sure for another 8 weeks.

At my 16 week growth and anatomy ultrasound, we learned that our babies were indeed boys. We also learned that they were suffering from Twin to Twin Transfusion Syndrome (TTTS). TTTS is a disease of the placenta affecting identical twins and is a disproportionate sharing of blood and nutrients through connecting blood vessels within the placenta. The result is that one baby (donor twin) does not get enough blood and nutrients. The other baby (recipient twin) gets too much blood and nutrients. The situation is dangerous and can be fatal to both the donor and the recipient twin.

I began drinking 3 protein drinks a day and laying on my left side as much as possible, both of which have been shown through research to be beneficial for the babies. Our babies were monitored with weekly ultrasounds from 16 weeks through 24 weeks. From 24 weeks through delivery, we had twice weekly monitoring via ultrasound. Each appointment seemed to be more positive than the last, with the occasional step back. While there were consistently fluid and size differences, both boys were continuing to grow and had strong heartbeats and visible bladders. Our situation never qualified for the laser surgery which severs the connecting blood vessels. After weeks of praying that the boys would hold on until the point of viability and then reaching the milestone weeks of 28, then 30, then 32, my doctors scheduled a c-section for 35 weeks.

In the early morning hours of June 19, 2007, at 33 weeks, I awoke with contractions. Once admitted to the hospital, the nurse could only find one heartbeat. I think we both knew then that one of our babies had passed away. The doctor brought an ultrasound machine in, where we found out that our donor baby, Evan had gone to heaven. The nurses and doctors immediately began prepping me for a c-section.

The constant phrase replaying in my head was “they have to get to Owen in time.” The c-section proceeded very quickly. I cannot even describe the feeling of hearing Owen’s cries. It was an incredible relief to know that he had been delivered in time. In stark contrast was the silence when Evan was delivered. I had seen the ultrasound. I had seen his still heart. I knew he was gone, yet I was still fervently praying that it was all wrong and that he was okay. I was praying that I would hear his cries.

Owen was whisked away to the NICU, where the first priority was stabilizing him. He had to have some breathing assistance and an exchange transfusion as his red blood cell count was dangerously high from the TTTS. It was nearly 6 hours from delivery until I was able to see my sweet baby for the first time.

While I was waiting to see Owen, we were able to spend precious time with Evan. My initial reaction was fear…fear to look at him, fear to hold him, fear to touch him. I saw my mother give him a kiss and my fear was gone. Oh how I long to hold my sweet Evan again, how I long to kiss his sweet and perfectly formed body and feel his soft baby hair. The few short hours we had him just weren’t enough. A piece of my heart went to heaven with him that day.

Owen spent 15 days in the NICU and has since thrived. Today, he is an incredible almost 2 ½ year old who shows no signs or lingering effects from his battle with TTTS or prematurity. Owen is a blessing to us and a complete joy. He amazes us daily with his sweet nature and insatiable curiosity. He has the most adorable dimple, beautiful blue eyes, dirty blond hair and the sweetest laugh.

The process of grieving a baby and celebrating a new baby all at once is overwhelming. Our loss did not fully hit me until 7 or 8 months out as I was busy with adjusting to motherhood. I often wonder ‘what if’ and wonder what Evan’s personality would be like. I wonder what it would be like to see two adorable boys running in opposite directions and interacting together. I look at Owen and I see an empty space beside him where Evan should be.

While I am still in the grieving process, I have been able to find joy again. While I have complete faith that Evan is in heaven and that we will be reunited one day, I still have incredible grief and miss my baby. I do not understand why God blessed us with twins and then took one home. I struggle with ‘why’ and with accepting God’s plan. I worry for Owen and the effect Evan’s passing had/will have on him.

As Owen grows up, we will continue to face the conflicting emotions of raising a surviving twin. Since Evan died on their birthday, that day will always be difficult. Seeing twins out and about often takes my breath away. Each time Owen passes a milestone or does something new, I have a wave of sadness mixed with the joy. Evan will always be part of our lives and we talk about Evan at home. We want Owen to grow up knowing about Evan. We have worked hard and continue to work to not project our grief onto Owen. We have planted trees in our yard for the boys and have participated in the Fetal Hope Foundation’s Race for Hope for the past 2 years. Evan is in my thoughts every day and much of the heartbreaking pain has subsided and I am able to envision him playing in heaven. I can celebrate that Evan is free of pain, disease and the trials of this world. I choose to believe that he is watching over us, specifically over Owen.

After losing Evan, I cannot even fathom what it was like for God to willingly send His Son to die for my sins and for yours and to watch Jesus suffer on the cross. I pray that through our loss, God will be glorified and that He will draw us and others to Him through Evan’s short life.

Click here for some of the resources that have helped me.