His name was Timothy

Photo By Senior Airman Shannon Hall | U.S. Air Force Tech. Sgt. Jeff Maese, right, 489th Maintenance Squadron aerospace propulsion craftsman, stands with his wife, Sonia, and son, Daniel in Abilene, Texas Oct. 21, 2016. Maese and his wife lost their second son, Timothy, when he was just two years old to multiple medical conditions. (U.S. Air Force photo by Senior Airman Shannon Hall)  

DYESS AIR FORCE BASE, TEXAS, UNITED STATES

12.20.2016

Story by Senior Airman Shannon Hall 

7th Bomb Wing

For Tech. Sgt. Jeff Maese, 489th Maintenance Squadron aerospace propulsion craftsman, and his wife, Sonia, this is a tragedy they were faced with that will forever affect their life.
“We had a planned pregnancy and were both very happy,” Maese said. “Even with Timothy’s condition, we were under the impression that he would be around for at least the next ten to fifteen years.”
When Sonia gave birth to their second son, Timothy Jace, they immediately knew something was wrong, but this wasn’t the first time they suspected a complication with this pregnancy
“When I was about four months pregnant, there was an incident at home when I was showering and I just started bleeding,” Sonia said. “Blood was everywhere and it was so much I could have filled up a Sonic Route 44 cup. We immediately went to the emergency room.”
A sonogram showed that Timothy was fine, and the expecting parents were told to schedule a check-up with their Obstetrician and Gynecologist. They followed up with their OBGYN the next day, who also didn’t find anything wrong. Over time the bleeding stopped and Sonia was checked thoroughly, but nothing was abnormal.
“I let my doctor know that I didn’t feel my baby moving as much,” Sonia said. “He did tests, but everything always came back negative, my amniotic fluid was great and I wasn’t dilating. I never had any other signs or complications.”
Timothy was born two weeks early, weighing seven pounds, 14 ounces. There was no cause for concern, until he started to cry.
“Once I heard him cry, it was a very distinct weird gasping cry,” Maese said. “Right then he was taken to the NICU, and we didn’t see him or hear from anyone that entire day.”
Over the next three weeks it was noticed that Timothy wouldn’t latch to his mother to feed or to a bottle to drink. After multiple tests, a variety of bottles, a full body scan, and a lactation consultation, doctors couldn’t diagnose anything wrong and began to administer a feeding tube through his nose.
It wasn’t until Timothy’s father noticed that he wasn’t grimacing, blinking or making any type of facial expressions that doctors decided to air-lift him to a children’s hospital. After a short discussion, the Maeses requested to have their son taken to a hospital closer to their family in San Antonio, Texas.
“While there, Timothy still had trouble feeding and started to throw-up so much that they had to perform a procedure where they wrapped his stomach to help keep the milk down and was given a Gastrostomy Button to feed him through,”Maese said. “After spending a month there, they gave us CPR classes, taught us how to use his G-button and then sent us home with no answers.”
Timothy, who was only a couple months old as this point, aspirated and quit breathing the morning after arriving home.
“I was feeding him through his G-button and he stopped breathing,” Sonia said. “I was on the phone crying and giving him CPR at the same time. He turned blue and was dying.”
Sonia was able to get him breathing again before the ambulance arrived and he was rushed to the local hospital, but upon arrival Timothy had to be air-lifted again to a more advanced medical center.
“When we arrived, they already had a team of about ten waiting on us to help Timothy. We knew we were in good hands,” Sonia said.
Within a couple of days, the medical team found that Timothy had a stridor cry, which is a high-pitched, wheezing sound caused by disrupted airflow. This made it very difficult for Timothy to breathe correctly on his own, and was the cause of him aspirating while at home.
After more tests, Timothy was also diagnosed with hypotonia, commonly known as floppy baby syndrome, which is a state of low muscle tone that reduces muscle strength. This syndrome affected Timothy greatly as he wasn’t able to hold up his head on his own. Additionally, doctors found he had facial paralysis and a mitochondrial disorder, which can only be diagnosed specifically through a brain biopsy too severe of a procedure for an infant to handle.
Timothy had to be kept sedated and was put in a neck brace to help make breathing easier. His doctors also discussed performing a tracheostomy. This is a procedure done to create an opening and place a tube through the neck into the trachea, also known as the windpipe, providing an airway and removing secretions from the lungs.
“This is something I did not want to do and I just cried,” Sonia said. “The doctor said you either do this or he doesn’t have a chance at life. This was a lot for someone his age and I always wondered if he would have these conditions forever or if he would eventually grow out of it. It never happened.”
The medical staff taught Jeff and Sonia how to change, clean and suction out Timothy’s trach tube in a two-week course.
After a month, the Maese family was released to go home and try to continue a normal life-style. Sonia became a stay-at-home mom, their living room was turned into a small hospital and nurses were in their home for more than 18 hours a day to help care for Timothy.
“We would suction out his trach tube fifty to eighty times a day and he received two breathing treatments a day,” Maese said. “We would have to use a resuscitation bag and attach popsicle sticks and pat him on the back during his breathing treatments. This was the only way he could cough up everything from his lungs.”
Life at home
Three times a month, the family would have to travel to the hospital for Timothy to be checked by specialists. Although these times were stressful and chaotic, the support from their Air Force family was overwhelming.
Tricare paid for medical appointments, the nurses and medications and the equipment easily covering over $1 million in medical bills for the family.
“My squadron, which was the 7th Component Maintenance Squadron at the time, was awesome,” Maese said. “At one point there was some confusion on my government travel card, but they handled everything and covered all the bills. They really took care of us.”
Upon bringing Timothy home, his family had to set up a hospital bed, a wheelchair and hospital machines in order to take care of him properly. With all of the equipment running constantly, electrical bills got expensive so the family moved on base to help limit any other hardships allowing Sonia to stay home with her son.
“I did everything because I wanted as much time as possible with my child. I would hold him and cry every single day,” Sonia said. “I wasn’t sleeping or eating and was depressed all the time. We went through a lot with him and I felt like he suffered and that’s all he knew.”
To this day Sonia still gets depressed, but finds happiness in working with kids at the Child Development Center on base.
“I love what I do and it makes it easier. I don’t want to stay at home, staring at the walls being sad all the time and Timothy wouldn’t want that for me either,” Sonia said. “It gets really hard when you have people complaining about their children or see reports of parents killing their children and it was tough because we wished so much for it to have been easier for Timothy.”
Due to his condition, there was no way for Timothy to communicate to his parents know what was bothering him at any given time. There was no way of telling if he was hungry, full, tired or even something as simple as his eyes bothering him because he couldn’t blink.
“We could tell when he was upset because his heart would elevate and we could read that on his heart monitor, and that’s the only way we knew,” Maese said. “He also did a lot of sighing when he was upset, but if we turned on Spongebob Square Pants, he was content. He loved that show. We did our best to try and understand him.”
Beginning of the end
Right around Timothy’s two-year birthday, things took a turn for the worst. He was getting sick more with common colds, the muscles in his face started to droop due to getting weaker over time and then he lost his gag reflex.
“We had to give him strong medicine for a respiratory infection, perform numerous breathing treatments and suction his trach tube a lot more than usual,” Maese said. “He was getting worse and there was nothing that could be done and his doctor said it was time to start giving Timothy morphine.”
Morphine is a narcotic pain reliever used to treat moderate to severe pain.
“I didn’t want to give it to him and I started crying, but his heart rate was so high. Morphine helps calm down patients in his condition, so that if they do stop breathing they pass peacefully,” Sonia said. “I would stay up all night because I didn’t know if that was going to be his last night.”
A week prior to Timothy’s passing, his body was no longer digesting food and his stomach was shutting down. The family noticed that when suctioning his trach tube, black sludge was coming up and a lot of blood was found in his ears. They were preparing for the worst.
His final day was full of nurturing and love as Timothy’s parents, grandparents, godparents and nurses held him constantly as his suffering finally came to an end Oct. 3, 2016.
“We tried to give him a normal life, but the sick life is all he knew,” Sonia said. “I would cry every day until I got sick, and even though it’s not as bad now I’m never going to be okay. It doesn’t go away and it doesn’t get easier.”
Mourning the loss of a loved one is a process that takes time, but the Maese family is remaining resilient by sharing their story and taking it one step at a time. Both enjoy their jobs and watching their first-born son grow into a young man. Together, they celebrate Timothy’s life on his birthday and remember the day of his passing each year.
“We are finally ready to tell Timothy’s story, advise people of their options and let them know that there is support out there,” Maese said. “We also want others to know that complaining about the small stuff isn’t worth it. Be blessed that you still have your children alive and well.”

• Date Taken: 12.20.2016
• Date Posted: 12.20.2016 13:52
• Story ID: 218251
• Location: DYESS AIR FORCE BASE, TEXAS, US