Caught on film: Doctor said it was ‘ok’ if their Trisomy baby didn’t eat. They didn’t listen.
DES MOINES, Iowa, June 21, 2016 (LifeSiteNews) -- Katie Buck felt that any moment she was about to completely lose it as she sat in the hospital room listening to the devastating words of the doctor. The 29-year-old mother suddenly felt as if she was living somebody else's life, or like she was having a bad dream from which she could not wake up. Her precious newborn baby was going to die. The baby she had carried within her womb for 37 weeks and who she had born into the world just days ago would no longer be there for her to hold, to love, to kiss. She felt her world come crashing down around her.
It was just three days prior to this that doctors had decided to induce Katie, even though it was three weeks before her due date. Scans had revealed that her little baby was not developing properly. He was too small. And to make matters worse, the flow of blood through his umbilical cord that delivered life-giving nourishment and oxygen was somehow restricted.
While the birth went well, Katie and her husband Ryan could immediately tell that not all was right with their little boy, whom they had named Alexander before he was born.
“He had some low-set ears. He had an extra thumb. The shape of his head was a little off,” Katie told LifeSiteNews. “You could just tell that something was going on.”
The parents had refused genetic testing earlier in the pregnancy on principle, believing it to be discriminatory against disabled people. They had decided to love and respect any baby that came to them, whether the baby had problems or not.
Blood tests were carried out on the tiny four-and-a-half pound Alexander, but the results were not fast coming. And then, three days after his December 8 birth, the doctor walked into Katie’s room to tell her what the tests had found.
‘Not in his best interest’
Alexander had Trisomy 18, a condition where there are three copies of chromosome 18 instead of the normal two. The condition often disrupts the baby’s normal pattern of development, often causing life-threatening problems including defects in the heart, lungs, kidneys as well as other developmental problems. A large majority of babies with this condition die within the first year.
As she sat now in the Des Moines hospital room listening to the doctor, Katie was having trouble taking it all in. Words became jumbled. It was all too surreal. She asked the doctor to wait until her husband arrived to finish what he had to say.
When Ryan arrived, he found his wife totally distraught. Katie pleaded with him to go with the doctor into another room to discuss Alexander’s condition. When Ryan asked the doctor if he could record what he was about to hear so that his wife could listen to it once she had calmed down, the doctor consented.
What Ryan caught the doctor saying on film six months ago when Alexander was born continues to anger him and his wife to this very day.
“He’s got increased risk of having significant heart defects…rib, kidney abnormalities, inter-abdominal tumors. All of those are not super important because some ninety percent of those kids don’t make it past the first month of age,” the doctor said.
Offering no help and giving no hope, but suggesting death as the only possible outcome for the baby, the doctor continued:
“We can look at his heart and run all kinds of tests, but no matter what his heart shows, heart surgery is not in his best interest, okay? Why put him through a big surgery, cause pain, discomfort, extend his stay if we can get him home? And, his life expectancy isn’t going to be lengthened by a heart surgery.”
Ryan, like his wife, was deeply shaken by the doctor’s words.
“Is there, like, a chance? Is it really that bleak?” he asked.
“It really is,” the doctor replied. “Ninety percent don’t make it through the first year. Most will die in the first month.”
The doctor then went on to tell the shaken father that it didn’t matter if Alexander ate or not, suggesting that if he didn't eat, “that’s ok too.”
“There is, how do I say it, very little limiting you from going home tomorrow,” he said. “Bottle feed him, breast feed him. Whatever he takes, great. Whatever he doesn’t take, that’s ok too,” the doctor said.
When the dad asked about the possibility of a feeding tube, the doctor immediately questioned the move.
Not giving up
Despite the doctor’s bleak prognosis, the parents did not intend to give up on their baby so easily. They stayed in the hospital another two weeks so that Alexander could receive a feeding tube and so that other tests could be continued.
“He was going to have a full tummy, no matter what happened to him,” Katie said.
But at each new twist or turn, the couple found roadblocks to Alexander’s care. For instance, despite the baby having a heart murmur that was easily picked up during his constant monitoring, no one suggested that he undergo a heart scan to determine the extent of the problem. When Alexander was having trouble breathing, no one suggested that he be hooked up to the oxygen machine.
“Alex actually needed oxygen and they didn't give him any. We didn't realize he needed it. We assumed he was ok, that it was perhaps a normal variant for him being born so small. But later we learned that he actually suffered from not having enough oxygen in his blood,” Katie said.
Doctors even suggested that it would be pointless to treat the baby’s case of jaundice. The parents had to constantly argue for tests or treatment that would have been offered to babies with normal chromosomes. When the parents suggested certain tests that might be done on Alexander to determined the extent of his problems, the doctor would say to them, "I just wouldn’t."
Despite many odds, Alexander was eventually stable enough to go home. But the doctor’s dire words about the boy’s inevitable death kept ringing in the parents’ ears. At every moment, they expected their son to leave them.
“The doctor was the expert,” Katie said. “I really believed him. I wasn't in a state of denial. I really believed Alex was going to die.”
But Alexander didn’t die.
Days turned into weeks. Weeks turned into months. Time went by and Alexander kept on not only living and growing, but thriving beyond everyone’s expectations.
“It was scary at first because you live as if death is on your doorstep. We were very apprehensive. It was very hard to enjoy a lot of our time with him. We would often think whether or not this was the last time we were going to give him a bath, or was this the last time I was going to breast-feed him, or was this the last time he was going to play with his brother,” Katie said.
When Katie and Ryan saw that Alexander was staying put for the time being, they realized that they needed to stop living in the future of the “what if” and live in the present of the “here and now.”
“Alex has taught me so much about not worrying about tomorrow. All the Scriptures about not worrying about tomorrow, they are true,” said Katie.
It has now been over six months since Alexander returned home from the hospital. The parents have learned how to change his feeding tube, how to administer oxygen, and how to tend for their baby who needs a little more care than other babies.
But most of all, they have learn an important lesson from their son about the beauty of life itself, no matter what kind of package it comes in.
“He rolls, he coos, he smiles. He is very social. He makes a lot of eye contact,” Katie said.
One day the parents were bolstered by a surprise visit in their home from Sen. Rick Santorum, whose eight-year-old daughter Bella also has Trisomy 18. Santorum talked about what a joy Bella is to their family and encouraged Ryan and Katie by telling them that they were doing the right thing.
Santorum gave the family a copy of Bella’s Gift, a book published in 2014 that tells the story of life with their special-needs youngest child. In the book, he inscribed this message:
“To Alex – You are blessed to be born to a family that loves you unconditionally. May God continue to bless you as you bless others who cross your path. Your friend, Rick Santorum.”
Katie remembers being encouraged by Santorum’s visit and his words.
“Alex will continue to surprise you. No matter what happens, everything will be ok,” she remembers him saying.
Full of surprises
And Alexander continues to be full of surprises.
“To be honest, his future is still uncertain, but that is frankly true for any of us. But, there is nothing in his immediate future that is life-threatening,” Katie said.
Katie said that the experience has taught her to be more cautious about what the doctor says, especially when it involves the life of a baby with chromosomal abnormalities.
“There is a pattern of tactics that these doctors use to steer these babies towards death,” she said, adding, “But, they can’t predict the future. They don't have crystal balls. They can't say for sure whether your child will live or die.”
Katie was able to tell the doctor to his face what she thought about his attitude toward her son.
“I told him that he made me very uncomfortable when he recommended that we not feed Alex. And I told him that he should strongly consider giving parents all of the options and information, rather than his own opinion, because we are the ones who need to live with these decisions at the end of the day,” she recalled.
Katie and Alex believe that the medical community needs to change its perceptive on babies who have extra chromosomes.
“The belief has been perpetuated that Trisomy 18 means that affected babies are ‘incompatible with life.’ And that is just not true,” said Katie.
“Even if they don't survive for very long, that is the only life that they have, and it should be respected, treated with dignity, most of all loved, and given just as much care as any other baby would receive. Our children deserve no less,” she said.