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We were on top of the world. Our son just surpassed three months illness free. Our son was thriving. He was learning to get on hands and knees. He was learning to take steps. He was learning to sit. These were all activities we were told a child with Trisomy 18 will probably never get to do. He was only a year old, and he already was trying to be active and keep up with his brothers.

We knew our son was stubborn from the day he was born. Doctors told us he might not survive birth. We were then told he might not survive the night. He kept proving them wrong over and over. His first birthday came with a big party.

He survived five months of constant illness, two surgical procedures, and "graduated" from Hospice care. He was thriving. We finally felt we could live and not prepare for death.

It is "funny" how quickly life can turn upside down.

I took our son for a routine screening. Children with Trisomy 18 are at increased risk for kidney and liver cancer. It is recommended that they undergo abdominal ultrasound every six months too look for these tumors.

Our son was doing so well, so I admit I was cocky going into the testing. We had overcome so many obstacles in the last year. Certainly this would be normal. 

I was so wrong.

I was called into the consultation room after the ultrasound was complete. Our pediatrician called and told me that there were multiple tumors on both of his kidneys. We needed to have an MRI as soon as possible to find out if there were cancerous.

My heart plummeted.

How could this be happening?

Haven't we been through enough?

I looked down at this happy little boy in front of me scared to death. We had already been through so much. We had finally got him breathing comfortably and thriving. We couldn't lose him.

He was sedated for an MRI. The results showed that the tumors were not believed to be cancerous yet. 

Our pediatrician called an oncologist, and we were set to meet with him the following week.

So many thoughts raced through my head. What were we willing to do in regards to treatment? What would our options be? How do I prepare our other children for this? 

I am grateful we received the oncologist we did. He came into our appointment having already spent hours reading up on our son. He knew about our own professions and children, and all that we had already been through. He even brought some documentation errors present in the chart to my attention (which I later took to medical records to have changed). 

I was not prepared for all that would happen in that appointment.

The physician spoke to us, described our son's diagnosis, and then listened to us. He presented us with some available options. But then he informed us that there were physicians that heard he was just meeting our son…with a Trisomy 18 diagnosis…and just discussing treatment…and they were not happy. 

Our son had been diagnosed with pre-cancerous kidney tumors. The treatment was chemotherapy and possibly surgery. These tumors are one of the easiest to treat.

But, our son had Trisomy 18.

We were instructed that any treatment would have to be approved by a medical ethics board. 

The physician was willing to treat our son. He felt that we knew what we were getting into and we were not naive about his Trisomy diagnosis or his tumor diagnosis. But, if the other physicians protested, it could be troublesome. We needed the hospital to support treatment as well.

My heart began to race. I know many Trisomy families are faced with physicians that refuse to perform any treatments on their children. We had been lucky up to this point, and all of our doctors were willing to treat our son. 

I was angry. How could these "doctors" place judgment on our child without ever even looking at them! 

How could they say our thriving little boy didn't have a life worth fighting for!

We prepared for the medical ethics board. We wrote a "Resume For Life" and created a board of pictures showing all of the things our son could do. We prepared the cutest outfit for him. I wanted this board to see the child they were sentencing to either life or death. We called multiple physicians and asked them to come and speak on our behalf.

The day of "judgment" came. We anxiously waited in the waiting room. We walked in, and I quickly assessed who was in the room. We knew a quarter of the people sitting around the large table. We were greeted with some smiles and some scowls. 

I don't remember all of the questions we were asked, but I do remember describing all that our son can do, how we had prepared our other children, how we handle hospitalizations, how we would know if it were our son's time to die, and my feelings towards the physicians that did not feel our son's life was worth fighting for. 

We left the room anxious and scared.

The following day, we received a call from the oncologist. My heart began to race. He told us that the decision was split before we went into the room. He then said that after we spoke, we sent people to tears. The final decision was unanimous.

Our son was going to be able to receive treatment.

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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