Addison—A Girl Worth Protecting

I have had moments of feeling really angry about what I see as selfishness in the people who are not staying home. But, mostly, I feel more of a connection to everyone. I feel, “You can help protect my kid.”—Lisa Weith

This past summer while writing about Give Kids the World, I met five year old Addison, who goes by Addy, and her sister Norah. They were waiting in line to ride horses. Dressed in matching outfits, Norah was encouraging her little sister to be brave and ride on the horses. Addy’s hesitation was only for a short time. As Norah mounted her guided horse she turned and waved to her sister, “See Addy, see me. You can do it!” The sweet encouragement of Norah gave Addy the last bit of brave she needed to mount her own horse. As the horse was guided away from the stand, Norah cheered for her sister. The bond between these two so evident.

As they dismounted and left the horse ring, I chatted with them. In telling them how much I loved their matching outfits, Addy said, “Well, we’re exactly alike except we have our own clothes.” I told them goodbye and they went on with their day. Later in the week I ran into the girls again and sat and visited as they ate. Their Mom, Lisa, shared with me Addy’s diagnosis, Mitochondrial Disease. They shared their adventure for the day and I wished them well. However, I have followed Addy’s story through Lisa’s Facebook page.

When the news of Covid-19 hit and social distancing started to be a reality, my mind went to Addy. She had just been released from the hospital due to a bout with pneumonia. If there was a reason to stay home, Addy was my reason. She is one of the beautiful people social distancing is meant to protect. By staying at home, my family could contribute to her protection. Knowing that, the restrictions and job furloughs seemed less a burden and more a righteous calling.

The reality for families like the Weiths is Covid-19 is a real threat to their children’s lives. “I wonder, is Coronavirus going to be what does it?” Lisa and Eric Weith know that as hospitals feel up with Covid-19 patience and hospital resources become limited, patients, such as Addy, will be coded as a Palliative Care patient. “She won’t qualify for a ventilator. If it comes down to my kid or another kid, the someone else will get the resources. Addy will get comfort measures only. We have to be so aware of that.”

“Seeing photos of people not respecting the social distancing request makes me angry, which is the defensive mechanism I have to protect myself from being hurt. I know it is not personal, but each photo feels like a direct hit to my heart. Each and every one of you gathering with friends and family puts my daughter’s life at risk. “

To protect their daughter, the Weiths are isolating themselves. Eric has taken voluntary FMLA to be home. The risk of him working outside the home and bringing the virus to Addy is one they just can’t take. “We can do all these drastic steps and we could all still get this virus. At the end of my day I need to feel like I did EVERYTHING I could to keep our family safe. This is my reality. “

Fighting for Addy is nothing new. When the Weiths decided to start a family, they ran into fertility obstacles. After multiple procedures and IUI cycles, Lisa underwent in-vitro procedures. They had three healthy embryos and decided to place all three. Within ten days of the transfer she knew she was pregnant with twins. Her pregnancy was complicated with bleeding and modified bed rest, as well as the Swine Flu. With her FMLA expiring, Lisa lost her job as a Nuclear Medicine Technologist. At thirty weeks, while lying in a small hospital near their home in New Mexico, her water broke.

The hospital was not equipped for this type of birth. The Weiths, knowing this, had made arrangements through Life Flight to be flown to Albuquerque to deliver the babies at a larger hospital. However, the winds delayed the flight too long and the babies were born via Caesarean section. Norah, the oldest, entered the world at 3 pounds, 14 ounces. Addy, a bit hesitant to leave her warm home tucked under her momma’s ribs, was pulled and twisted to delivery, weighing 3 pounds, 1 ounce. “I was not able to touch them or see them. They wheeled them out and rushed them to the other hospital.”

The babies’ grandmother and aunt flew straight to Albuquerque, arriving to the hospital before the babies. Lisa, undergoing a surgical birth, was released from the hospital 24 hours after they were born. She made it to their hospital the day after being released from the hospital. “It all just felt so surreal. Like, did, I really have them? I had not held them or touched them. I just needed to be there, with them. I would have gone straight there. I needed to be there.”

For the next forty-seven days, the Weiths made The Ronald McDonald House their home. Norah and Addy were considered Feeders and Growers. They just needed the extra time at the hospital to get big enough to go home. Norah took to bottle feeding with ease and at day 35, she was able to leave the hospital. Addy, struggled with eating. She remained on a feeding tube. Addy would have significant Apnea episodes where she would stop breathing when she would eat. At day 47, Addy was released and the Weiths were able to go home.

Within, 24 hours of being home, they were able to see their pediatrician and were able to come off the oxygen tubes. They had weathered the first storm and were home, ready to raise their beautiful girls.

Norah was an easy, content infant. Addy, however, struggled. She was an unhappy baby, either screaming or swaddled to try to get her to rest. Eating was a difficulty. After seven formula changes, there seem to be no answer of relief for sweet Addy. She suffered from significant reflux and would vomit constantly after eating. Lisa turned to dream feeding Addy, waking up every three hours to feed her as she slept. This was the only solution when Addy’s weight stalled out at nine months old. As Lisa pursued help with Pediatricians, they seemed to be unworried. Lisa knew there was a problem, but could not convince the doctors. “I knew this was not a normal scenario. I kept questioning,’How much weight does she have to lose until you see this as serious?’” Finally, at the pediatrician’s office, Lisa attempted to feed Addy as the doctor watched. The pediatrician sent them straight to the hospital where they stayed for 17 days.

Tomorrow I will continue Addy’s story. I hope you will check back. But for today, I hope we all will do everything in our power to protect Addy and the kids like her by staying at home.