Aimee & Olivia

From the moment my husband, Roger, heard the word “twins,” he was overjoyed. Remembering the wonderful, ecstatic expression on his face as we heard the news for the first time is one of those moments that I’ll always treasure. On the other hand, I was shocked and a little worried about how we would manage with two babies and, as a nurse practitioner, I was also concerned about the complications that frequently accompany pregnancies with multiple babies. However, the shock was soon replaced with great joy and anticipation about our identical twin daughters. We couldn’t wait to share our wonderful news with family and friends.

Just five weeks later, my early fears resurfaced in a resounding fashion and our lives were turned upside down when our daughters were diagnosed with a severe case of Twin to Twin Transfusion Syndrome (TTTS). TTTS is a disorder that occurs in 10 to 15% of pregnancies with identical twins. It is a devastating and frequently fatal condition that affects the blood circulation between identical twins and the shared placenta. If left untreated, our babies would not have survived. Even with treatment, TTTS can cause a range of problems including physical and cognitive disabilities as well as preterm delivery. Although there are several ways to treat TTTS, at this time, there is no definitive cure.

After consulting many specialists and the TTTS Foundation and doing extensive research, we decided to pursue the treatment option of placental laser surgery to try to correct the TTTS. At the time of our diagnosis there was only one physician in the United States available who had much experience doing that surgery, Dr. Ruben Quintero. Two weeks after our diagnosis, Roger and I flew to Tampa, Florida, for the surgery. As part of a feature story on the pioneering surgical advances of Dr. Quintero at the Florida Institute for Fetal Diagnosis and Therapy, our story and the surgery itself was broadcast on “Good Morning America.” Our daughters made it through the surgery and the critical first 24 hours afterward.

Returning home one week later, we were hopeful that we would have our wished-for miracle: that both of our daughters would survive and be healthy. Three weeks later, at 21 weeks gestation, our dreams were again shattered, when our perinatologist diagnosed Olivia with pulmonary stenosis and Aimee with hydrops (excess fluid in the heart and lungs) and hydrocephalus (fluid on the brain). Although the specialists were somewhat optimistic about Olivia’s survival, provided I could carry the pregnancy close to term, they predicted that Aimee would die in utero or would have severe lifelong disabilities. Needless to say, the rest of my pregnancy was filled with fear and uncertainty as well as hope and prayer.

At just over 31 weeks’ gestation, I was admitted to the hospital for worsening preeclampsia. Two days later, tests indicated that Olivia was in trouble and that it was time to deliver; I was so scared for both of our daughters. At 6:11 p.m. on June 18, Aimee Lucille was delivered by cesarean section. Although she was small, weighing just 1560 grams (3 pounds, 7 ounces) and 15-1/4 inches long, she emerged pink and crying. One minute later, at 6:12 p.m., Olivia Jacqueline was born. In contrast to Aimee, Olivia was pale gray and eerily silent. She was smaller, too, weighing just 2 pounds, 11 ounces and 14-7/8 inches long. In my heart, I feared the worst for our Olivia.

Both girls were immediately rushed to the resuscitation room. Chaplain Mary Myers accompanied them, holding Olivia’s small hand while the incredible NICU team worked to save her. Roger was not allowed into the resuscitation room, but it comforted us greatly that Mary was with them, since I had gotten to know her through many phone conversations during the last tumultuous month of my pregnancy. After a while, Dr. N. came to tell us that Olivia was doing very poorly. Although they had tried many emergency interventions, none had been successful. He told us that there was no hope that Olivia would survive and then asked us to make the most horrendous decision that any parent could ever make: whether to remove her from life support. Our hearts were broken. All through the pregnancy, Olivia had been considered the healthier baby! We couldn’t believe that she was dying. We requested time to be with her and Aimee and were shown into the NICU.

We had a brief but precious time with Olivia before she died. With the help of our daughters’ NICU nurses, we were able to put them together in Aimee’s warming bed, take several priceless pictures, and have them blessed. We then took Olivia back to our room to bathe and dress her. In that short time, we held our dying daughter and tried to convey to her just how much we loved her. Four hours after she came into the world, Olivia Jacqueline Lutz quietly died.

At that same time, Aimee was beginning to show worsening signs of respiratory distress. Late into the night and early the next morning, the NICU staff worked diligently to save her. Finally, they found something that helped (nitric oxide), but as many of you know, that was only the beginning of a long, difficult journey. Roger and I prayed that Aimee would survive, but feared that she would die. After all, Aimee was not expected to survive the pregnancy and had developed so many problems in utero. Even if we were lucky and she survived, what quality of life would she have?

When she was one week old, we were finally able to hold her, even though she was still on a ventilator. Because of the ventilator and other medical equipment, it took two nurses and a respiratory therapist to transfer tiny Aimee from her bed and into my eager, waiting arms. On July 6, 18 days after our daughters were born, we gave Aimee her first sponge bath. Following Aimee’s bath, we hurried down to the hospital chapel where Mary Myers conducted a beautiful memorial service for Olivia: another time of joy and sorrow.

Amazingly, over time, Aimee’s many medical problems began to resolve. Her progress, though fairly steady, was not without setbacks and disappointments. She struggled with breathing and eating. There were problems with her heart, brain, bladder, kidneys and blood pressure. Because of her medical problems, Aimee had several pediatric specialists on her health care team in addition to the NICU staff. We spent long days at the NICU— loving Aimee, holding her, and praying she would be all right. At the same time, we were grieving for Olivia.

One month after her birth, Aimee moved to the Level 2 Nursery. That was a big day! I felt like we were a small parade with Aimee riding in a crib that was steered by several of the NICU nurses. She was still on oxygen, requiring medications, gavage feedings, and monitoring, but she was making progress. Near the end of July, her doctors and nurses finally started to talk about us bringing Aimee home. Until we heard the actual words, neither of us was truly certain that we would be bringing a baby home. I began to spend the night and day with Aimee so that I would feel more comfortable caring for her. We would be taking her home with oxygen, a feeding tube, and medications, as well as an apnea monitor and pulse oximeter.

On August 19, we brought our dear Aimee home. Like the day that Aimee and Olivia were born, it was a bittersweet day for our family. We were lucky to be bringing home our miracle baby, but full of sorrow that we weren’t bringing her sister home, too. Leaving the hospital was difficult. It was, after all, the only home that Olivia had ever known. We had also gotten to know many of the NICU staff during Aimee’s 63-day stay and we knew that we would miss their medical expertise as well as their wonderful support and encouragement.

Last June, Aimee celebrated her second birthday. It was also the second anniversary of Olivia’s death. Once again, joy and sadness were entwined. At two and a half years of age, Aimee is a happy, healthy little girl who surprised us all. Each day Aimee reminds us of her sweet twin, Olivia. Roger and I are so very grateful for both of our daughters who showed us how precious and unpredictable life can be and why it is so important to cherish each and every day.

Kristin
…She has had a subsequent son, and also recently earned her PhD in nursing.