Bill Line was told that he wouldn’t see his 34th birthday. He was told this only 6 weeks before he turned 34.
Bill is a caring and spiritual man, very easy to talk to and easy to be around. He and his wife were married shortly after graduating from high school and had 4 daughters.
Their youngest daughter was born July 19, 2005 with some health issues. When she was born, they actually thought they had had a son. They named him Matthew Robert Line and took him home, happy and ecstatic about the new addition to their family.
Eight days later, they got a call from a state doctor. He told them that a few tests came back positive and that their son was missing an enzyme. The doctor stated that it was imperative that they attend an appointment that the state doctor made with their pediatrician the next morning.
They arrived at the pediatrician, who did a normal wellness check. The pediatrician didn’t find anything wrong. He told them that they needed to go to a specialist because the baby was missing an enzyme. The pediatrician wouldn’t give them any more information, but did make them an appointment with the specialist at Swedish Hospital in Denver just an hour later. They left immediately.
The specialist was a pediatric endocrinologist. After they arrived in his office, the doctor’s first words were, “Nice to meet you. What’s the baby’s name?”
Bill responded, “My son’s name is Matthew.”
“I’m not very comfortable calling your son a son.”
Externally, his son was a boy, with all the parts you’d expect to find on a healthy baby boy. What was the doctor talking about, anyway?
The doctor went on to explain. The baby’s adrenal gland was broken, essentially. Among other things, the doctor explained that the male puberty is controlled by this gland.
In the first trimester of pregnancy, everyone is female. During the second trimester, the Y chromosome kicks in and the males differentiate as males, developing male secondary sex characteristics.
In the baby’s second trimester, the broken adrenal gland turned on male puberty. This formed the secondary sex characteristics, but the baby still had ovaries. Internally, Bill’s son was actually another daughter.
The doctor said that she was very sick and would do a chromosome test, just to be sure. He said that she needed steroids to provide cortisol and retain salt in her body or she would die. The doctor told them to get to Children’s Hospital immediately and not to even stop for red lights. He said that there wasn’t even any time to call an ambulance.
The specialist showed up and she was admitted to Children’s for testing and was placed on steroids. The steroids helped keep blood pressure regulated and keep salt in the kidneys. The chromosome came back, showing that she was genetically a girl.
Bill and his wife were presented with some difficult choices. She was going to grow up genetically female and have a menstrual cycle and develop breasts. Would they choose to have a surgery now and change the male parts to match her female genes, or raise her as a boy until her menstrual cycle, and then have the surgery? These choices should never have to be made by a parent. They chose to change her name and have the surgery so her outside matched her inside.
They named her Destynee Ryann Line.
In January of 2006, they went to Indianapolis to meet with a doctor that had performed surgeries on two other similar CAH babies. He did the surgery, with 100% success. Everything went well with the recovery and things were about as good as you could get.
Bill got a new job and he and his family moved to Wyoming. By some stroke of luck, their doctor traveled regularly to Wyoming, so they didn’t even have to change doctors. That made the move much easier.
Destynee was doing amazingly well, responding to the steroids and living a happy and healthy life.
They decided to head to Minnesota for Halloween that year to visit Bill’s sister, since her family had never met Destynee. When they got up there, things were going well, except that Destynee was whining all the time. She continued to get her medication as normal. During the day she was fine, but she had a couple rough nights, as all babies do.
They left the morning off November 2, 2006, and drove back to Wyoming. The got to Council Bluff, Iowa and stopped for lunch and everything was fine. Later on, in Omaha, one of the other kids needed to use the bathroom, so they stopped at a gas station. Bill took the two older kids inside to use the bathroom.
While in the bathroom, a woman came into the bathroom and asked, “Is there a Bill in here?”
The first thing that came to Bill’s mind was that something happened to his daughter.
He ran out of the bathroom and the lady said that his wife needed to see him in the parking lot. The lady offered to help his other daughters finish up.
As he ran out the door he heard, “Call 911, the baby’s not breathing.” He ran out and his wife was holding Destynee. The baby was dead.
Destynee was airlifted to a hospital in Omaha. A sheriff drove everyone to the hospital and when they got there, they were met by Social Services. They took Bill’s kids, and eventually met with three doctors. They told her that there wasn’t a lot that they could do and that Destynee was DOA. The paramedics tried their best to revive her, but they weren’t successful.
Bill and his wife were devastated. They weren’t given time to console each other, as the police immediately split them up, without even giving Bill time to kiss his wife or tell her that he loved her.
The detectives took Bill to another room and started questioning he and his wife separately. The police had searched the family van that was still at the gas station. All of the baby’s medication was still in the van, still in the name of Matthew. The police questioned them about why were they giving Matthew’s medication to Destynee. The police just did not understand and would not listen to their explanation.
Finally, they got a hold of Destynee’s doctor, who confirmed that Destynee was born as Matthew before they knew about the enzyme problem and before the surgery. Still, he and his wife were separated and hadn’t been allowed to see the baby yet to say their final goodbyes.
Eventually, by some stroke of luck that Bill still didn’t understand at the time of the interview, his sister somehow found out about the baby and had her former partner, a higher-up in Homeland Security, pull some strings. The detectives vanished, and Bill and his wife were finally allowed to kiss the baby and say their goodbyes. His sister’s former partner showed up at the hospital, telling Bill that his sister was on the way. He offered for them to stay at his house that day, not far from the hospital.
They went to his house, and Bill’s relatives from all over began traveling to Omaha to be with them. They had to make arrangements for their daughter, and decided to get her cremated, because they couldn’t leave Omaha with the body unless they had it shipped. They decided to have her cremated so they could take her home. Bill’s wife would not leave Omaha without her daughter.
They made it back home to Wyoming, and all too suddenly, they were thrust back into their old routine, going back to work.
Bill turned to food to deal with his loss. He didn’t talk to anyone. He ate and ate and ate.
Bill told me that he weighed about 275 lbs out of High School, and estimated that he was about 350 when his daughter passed away in 2006. By January of 2010, he weighed 505 lbs.
Bill got really sick in Wyoming, and the doctors couldn’t tell him exactly what was wrong with him. He had a hard time walking, breathing, and even working. He was working 60 hour work weeks, on his feet most of the time at 505 lbs. His performance suffered, and he lost his job. He and his family lost their house, and were forced to move back to Denver to a small apartment. They had to leave half of their stuff in Wyoming because they couldn’t afford a larger moving truck.
He and his wife both got jobs in Denver so they could get health insurance and get health care again.
In December of 2009, Bill got the courage to go back to the doctor. The doctor told him that he needed to do a sleep study, pulmonary test and a few others. The tests told him that he needed to go to the hospital immediately to redo the sleep study. The numbers appeared to be flawed, and he redid the test. His oxygen level while sleeping was about 42%. They will generally hospitalize anyone when their oxygen level is anything below 90%. He was diagnosed with sleep apnea. They said that during the average 8 hour night of sleep, Bill was getting only about 15 minutes of actual helpful sleep. They stated that the weight of Bill’s neck was crushing his larynx as he slept, and they were scared that he simply wouldn’t wake up.
The doctor said that the only thing they could do to ensure that he’d live through any given night was to install a tracheotomy tube so he could breath. They told him he needed to lose 250 lbs as soon as possible and that gastric bypass was the only thing that would work at this point. They said that if he didn’t do these two things, he wouldn’t live to see his 34th birthday. When they told him this, it was the middle of January, barely six weeks before his birthday.
He had the trach placed in his throat in January, and the doctors told him that the next step was gastric bypass. If he didn’t get the surgery, they told him he wouldn’t live another six months.
The insurance company denied his surgery. They stated that he wanted the surgery for cosmetic reasons. After a long and stressful battle with the insurance company, and a letter from his cardiologist saying that the surgery is necessary or Bill will die, progress was made. In May, the insurance company approved the surgery. He couldn’t get in for the procedure until June because, of course, the physician was out of the country on vacation.
Mind you, in January, the doctor said six months would be the end of Bill, and the end of June was getting really close to that six months. Bill was very worried. Luckily, the physician returned and got Bill in for surgery on June 9, 2010.
Bill successfully recovered from surgery, and his weight loss journey began. He bounced back and was getting better, and acknowledged how close he was to an early death, which would have left behind three beautiful daughters and a loving wife.
Bill was on disability and times were tough. His church pitched in and helped him and his family out. The church paid his rent every month and greatly contributed to keeping them afloat. His wife went to various charities and experienced the kindness of strangers, which greatly helped them in their time of need.
Things are better now. Bill runs a store, keying in on his years of restaurant management experience. He started back to work after his surgery to see if he could do it. Eventually, he posted his resume on his church’s website, and was contacted through there and landed his management job in May of 2011.
On January 17, 2012, Bill claimed victory. This is what his Facebook status read on that day: “I have officially lost 300 pounds!!! It took me 2 years to the month and a Rue N Y gastric bypass surgery and the love and support of many many family and friends but I have went from 505 to 205. Thank you all!!”
300 lbs. Bill brought himself back from the brink, having suffered through a tragedy that nobody should ever have to live through. He dealt with his anguish by turning to food, and it almost ended his life. It’s not too hard to think, when I met and talked to Bill, that someone was looking out for him and his family. He is a man who deserves to be here and lives a good and honest life.
After the gastric bypass surgery, Bill lost an amazing 30 lbs in seven days. He saw a glimpse then that things would be okay.
Bill said that he first really saw the light when he was finally able to sleep through the night. They took the trach tube out right before Halloween of 2010. He was scared because the trach allowed him to live and breath at night. The first couple nights after they took it out, he didn’t sleep out of fear. He finally decided that since he lost 150 lbs, he could safely go to sleep. He awoke that next morning, having slept comfortably through the night. When he woke up that morning, he knew that he was going to live. “In that moment, the light was there, and I knew, ‘Hey, everything is going to be okay.’”
As for their day-to-day lives, Bill said, “We’re just chuggin’ man.” He and his family are living life and enjoying each day. His girls are growing up and thriving, enjoying basketball games, holidays, and pretty much everything that comes with a happy life.
Bill and his family look back on Destynee’s birthday, and on the day she left. Those are hard days, but they are able to get through them, thanks to their own strength and the support of their friends and family.
Bill said that he has only one more surgery to do, a cosmetic procedure to get rid of excess skin that is a result of rapid weight loss. He said that it costs $20,000 and is not covered by insurance.
Bill was able to move forward and see the bright spots in life again. Like any good Phoenix, he was able to spread his wings and fly after being burned down by tragedy. This is a good man that experienced loss so dramatic that I can’t even imagine what it was and is like to deal with. The fact that he sat down with me and so eloquently shared his story, coupled with a positivity and optimism looking towards the future, grateful for the myriad of blessings in his life; it all is deeply moving.
There are many lessons in his story for the reader. If you have lost a child, you are not alone. There are others out there that have some idea of the pain that you are dealing with. On lonely, sleepless nights, that simple fact might help a little.
There are many ways of easing the pain while moving through the hard times. Some people listen to music, write it out, talk to others, exercise, etc. Some people turn to more detrimental means. It’s important to do your best to keep things from getting out of hand. Whether it be drugs, alcohol, or even food, all things in excess can take their toll. Getting help and talking to others about what you’re going through is a helpful step that can make your recovery smoother. The hardest part is getting started.