Editor’s note: March is Trisomy Awareness Month. Today LifeSiteNews brings you an exclusive story of a girl with Trisomy 18 who continues to defy the medical experts.
LAKE TAPPS, WA, March 25, 2015 (LifeSiteNews.com) — “You’ve got to get this through your head,” the doctor stated forcefully, slamming her fist down on the table. “This is NOT a viable pregnancy. There is NOT going to be a baby to bring home from the hospital. The sooner you accept this, the better for you and your baby.”
It was December of 1999. Terre Krotzer, 39, had learned just days prior that her unborn baby girl had Trisomy 18. Doctors painted a bleak picture for Terre and her husband Randy of Lake Tapps, Washington. The genetic disorder meant that if the baby did not die before birth, she would be born with numerous deformities including heart problems and club feet. She would have serious developmental and motor delays, and would most likely die within moments of being born.
Amniocentesis confirmed the parents’ worst fears, Trisomy 18, or Edwards Syndrome. The doctor immediately offered to “interrupt” the pregnancy.
“Get this behind you quickly and get on with your life. You can try again,” Terre remembers her doctor suggesting in her telling of the story to LifeSiteNews over the phone.
Even though Terre and her husband had been looking forward to bringing this new life into their rambunctious family of four boys, they found themselves being swayed by the professional advice.
“They had me so terrified,” Terre said. “The way they described the horrific things that could and would be wrong with her made me feel like I was being inhabited by an alien creature.”
“We were given no hope. We were told we would not bring our baby home. We were told she was not a ‘viable’ pregnancy. We were offered genetic counseling. We were offered the opportunity to ‘interrupt’ our pregnancy. The one thing we were not offered, was hope. And hope was the one thing we desperately needed.”
Looking for answers, the couple turned to their pastor who, to their dismay, sided with the doctors.
“That was not the answer we were looking for,” Terre said. “We wanted someone to tell us how to stand up straight and move forward with this.”
Terre felt as if she had come against a brick wall in a dark corridor with no possible way to go forward. Uncertainty plagued her. Before the diagnosis the baby had been “very active and very much alive,” but now Terre had noticed the baby had stopped moving altogether. She wondered if her baby had already died.
Then one day, in the midst of her darkness and almost despair, Terre suddenly heard a quiet voice inside her heart: “Go to the internet, go to the internet,” it repeated incessantly.
“I went to the internet, in all my fear, looking for some sort of sanity, some sort of guidance,” she said.
Terre’s first couple of “Trisomy 18” searches uncovered what the doctors had already told her, namely, that her baby was “incompatible with life.” She saw horrific pictures of deformed babies. She saw pain, suffering, and misery. She clicked onward, searching for something, anything to give her hope.
She then found something that changed her and her baby’s life forever.
“I found stories of others who had traveled this road. I found families who had children who were living with Trisomy 18. I found families who had lost their Trisomy 18 child. I found that one thing they all had in common — whether their child was living or not — was they all felt blessed by the experience.”
She became positively excited when she found pictures of a five-year-old and an eight-year-old with Trisomy 18 who were still living. For the first time in many weeks, Terre felt the first flicker of hope. Perhaps there was a way forward after all. As she sat in front of the computer screen poring over the stories of how other families had moved forward with a Trisomy 18 child, she suddenly received the clearest sign that she was now on the right path.
“At that moment my little girl kicked, and then wiggled as if to tell me, ‘Mom I’m still here, I just needed to know we’re in this thing together,’” Terre said.
It was then that Terre realized her baby, Trisomy 18 and all, was not something to fear, but someone to love.
“All of a sudden, she stopped being this alien creature, and became my little girl again. I knew then that while our time might be limited, we were going to make the best of the time we would get, and celebrate this precious little life every day.”
A reason to come home
It was upon sharing her newfound hope during her next appointment that the doctor slammed her fist upon the table, stating: “There is NOT going to be a baby to bring home from the hospital.”
While Terre remained committed to bringing her baby girl into the world, even if it meant they were to be together for moments only, she nevertheless found herself giving into the doctor’s pessimism. She decided to not set up a nursery room for the baby. She even returned some maternity clothes, thinking they would not be needed.
Then, one night towards the end of January, Terre woke up in the middle of the night and sat bolt upright in bed. What had she just heard? Again, that quiet voice inside her heart: “If you don’t set up a room for this child, she has no reason to come home.”
Terre realized what she must do. She set out to make a sweet and adorable nursery with exquisite fabrics. “Not only did I need to set up the room, I needed to make everything that went into that room myself, because I knew what I was going to be able to do for my baby was so limited,” she said.
Terre refers to the following months until her daughter’s birth as a “living limbo.” They were months of worrying and wondering, of tears and anger. It was a time of trying to walk two contradictory paths at the same time, one that led to the joy of a new birth, the other that led to the sadness of a funeral. Terre and Randy’s hope of meeting their daughter for the first time was continually checked by the knowledge they could lose her at any moment.
As the due date approached, Terre presented her doctor with a birth plan that included a possible C-section if the baby showed signs of distress. The doctor refused outright.
“I will not do an unnecessary surgery on you because this baby is going to die either way. I won’t even allow her to be monitored during labor so you don’t know when she dies,” Terre remembers her saying.
The parents were livid. They demanded a new doctor.
“We explained to him that we understood the baby could die, but it was extremely important to us that she be born alive. We told him that even if we have 30 seconds to look her in the eyes and tell her we love her, it will be worth it to us,” Terre said.
It was a decision that saved the baby’s life. Terre decided to be induced on March 25 so that her new doctor would be able to be present for the birth. At one point during labor the baby’s vital signs dropped. The doctor immediately ordered a C-section. Kristina Rachel Krotzer was born alive and kicking and was immediately pronounced a “miracle” by the doctor.
“She was tiny, just 3lbs 10 oz. And she was beautiful. She required no intervention at birth, just a little bit of extra oxygen. I remember the doctors not really being sure about what to do because they were expecting Krissy to die, and this tiny child was all about life and living,” Terre recounted.
Since Krissy had trouble nursing, doctors placed a feeding tube through her nose. After being kept for five days in the hospital, Terre was told that she and Krissy could go home.
“We knew the hospital was sending her home to die but we also knew that there was nothing they were doing for her that we couldn’t do at home. And we knew that at home she would be surrounded by the love and energy of people who believed in her and in her possibilities,” she said.
Living with Krissy
But Krissy did not die. Terre would wake up every morning as the days, weeks, and months rolled by, wondering if today was the day they would lose her. It was a daily roller coaster of emotions that eventually took its toll on the worn-out mother.
One day Randy walked into Krissy’s room and found Terre curled up in a heap under the crib, sobbing uncontrollably. She remembers seeing his feet as he approached the crib.
“Get out from under there,” she remembers him telling her kindly, but firmly. “We are done living her death. From now on we’re only going to live her life. She’s here. We’re going to appreciate life with her.”
“That was exactly what I needed to hear,” Terre recounted. “From that moment on our focus has been helping Krissy grow and learn and become the incredible person she was born to be.”
As the years progressed, new obstacles were met and overcome. Krissy had trouble eating, so they started feeding her through a tube inserted into her stomach, which she still uses. When she was three months old, she struggled with breathing, so she had a tracheostomy inserted in her neck, which she still uses from time to time. She never learned to talk, but she chirps like a bird to let people know what she is thinking and feeling. Terre says Krissy’s sounds change according to her mood.
“I joke with people that it sometimes sounds like an aviary in our house,” Terre said laughing: “You never know what birdy is going to come play today.”
Krissy loves listening to music, including Katy Perry and Demi Lovato. Her favorite song is “Let It Go” from the Disney movie Frozen.
Precious moments treasured by the whole family come often and are often unexpected.
“She’s a real trickster,” Terre said. “She loves to flirt and play games. And she loves men and she loves boys, probably because of her wonderful brothers. She loves to play with things that dangle and make noise. She loves musical toys.”
It was about a year ago that Krissy surprisingly started to giggle. Now when Randy comes home from work, Krissy meets him at the door and shows how delighted she is with chirping and giggling. Terre calls the ritual a “beautiful love-fest.”
“It’s about the simple things, not about all these big things that we think are important in our lives. It’s about the people who we love, and loving them back,” Terre said.
Krissy goes to the same public school that other children attend, but in a wheelchair accompanied by an assistant. One unexpected moment came during her grade eight graduation ceremony last summer when she received the Principal's Award.
“This year, the criteria for the award is strength,” the principal said during the ceremony. “Class of 2014, I know that there are at least 50 to 100 of you right now that think you have this award pegged. Though all of you are strong in your own way, there is one that exhibits more strength and determination than all of the rest of you.”
“From this student’s first days on planet earth, she and those around her have been told that she would not make it to this day. Despite what people have said about her chances, this young lady has survived countless surgeries and difficult situations and sits before us today probably with a smile. I think many of us, if not all of us, can too easily take life for granted. This young lady reminds us that every day is a gift,” he said.
The stadium rose to its feet clapping and cheering as Krissy was wheeled out to receive the award.
Another unexpected moment came when Army Major Larry Wheat approached Terre and Randy in 2013 to ask if he could run in a marathon while pushing Krissy in a stroller. Wheat’s daughter Abby was stillborn at 30 weeks after being diagnosed with Trisomy 18. He wanted to run with Krissy to not only honor his daughter’s memory, but to raise awareness about Trisomy 18 children and to let parents know these children deserve to live. Attached to the stroller are colorful ribbons, each one representing a child who lives or has lived with Trisomy 18.
Last weekend Wheat ran with Krissy in the Alamo 13.1 in San Antonio, Texas. This year Wheat ran to raise funds to purchase special running strollers for other children with Trisomy 18 so they can enjoy the outdoors.
“We’re getting awareness out there,” Terre said. “We’re trying to show people that just because you get this diagnosis doesn’t mean that it has to be a bad thing.”
Life is a gift
Terre believes her daughter is the “greatest teacher I’ve ever had.”
“The biggest thing she has taught me is to value life in whatever form it's in, and to value the mission we’re given when we’re born, because it might not be the one we thought it was. Krissy has taught me that you can be positive when you think things are horrible. ”
“She’s taught me to just value every single day that we get,” she said.
Terre said that Krissy seems unable to feel sorry about herself and her situation. She describes her daughter as happy, joyful, and grateful.
“The one thing I believe is that these kids don’t come with an ego. They don’t have that voice that talks to them and tells them all the things that are wrong in their life. Because of that, they are just joyful and grateful for what comes their way,” she said.
“This little girl who can not do anything to care for herself is so filled with love that no matter how much she needs, she still gives far more than she takes. She is a beacon of light. She has taught me to believe in possibilities. She has taught me what it truly means to give of yourself. She has taught me that we create the world we live in. We can choose to be happy in spite of unimaginable odds.”
“Life is a gift and no one I know has celebrated that gift as beautifully as Krissy does,” she said.
Looking for the positive
Terre will tell parents who have received a prenatal diagnosis involving a chromosomal abnormality to look for the positive, no matter what happens.
“You don’t know where the path is going to go, but if you stay on the journey and get to the place of acceptance where you can appreciate every minute, you will look back with joy,” she said.
She tells parents straight out that termination is not a solution to their baby’s problems.
“The only way you guarantee your child’s going to die is when you terminate. You are fulfilling the doctor’s prophesy. Termination is a self-fulfilling prophesy. Just take each day as it comes, and let life happen how it’s supposed to happen, one day at a time.”
The trick is to focus on the life that the baby has and to celebrate what you’ve got, she said.
“Celebrate every minute, even when your baby is still inside of you. You’ve got to celebrate and make memories every single day, because you don’t know how many days you’re going to get. The truth is, we don’t know with our other kids how many we’re going to get either. The difference is that someone has come into our face and told us that this child has this condition and will die. Otherwise we wouldn’t be in that dark place. If we were just focused on the baby, we could have joy.”
Today Krissy turns 15.
If you have a trisomy diagnosis and need support contact Support Organization for Trisomy (SOFT).