Tiffany Goodchild had the perfect pregnancy, but after she arrived at the hospital things quickly spun out of control.
“It was a whirlwind. We decided to schedule a C-section, then it turned into an emergency C-section. When (Karter) was born, my husband (Kole) hadn’t even made it into the room, it happened so quickly,” said the Hugo resident.
When Karter was born June 26, 2016, he was not breathing. Karter had lost 80% of his blood in utero, which was later determined to be caused by a spontaneous fetal maternal hemorrhage. Because he lost so much blood and was oxygen-deprived, he developed a brain injury called hypoxic-ischemic encephalopathy (HIE). HIE is brain damage caused by oxygen deprivation and limited blood flow.
“We were told, ‘He is going to have no quality of life, there is no hope, there is no chance; when do you want to remove life-support?’” Goodchild recalled. “It was so devastating. I was in such shock and grief.”
Goodchild and her husband were told that Karter would be dependent on machines and that he would never be able to open his eyes, cry, swallow, eat, breathe, see, hear or walk. They were told their only option was to remove life support.
Five days after Karter was born, he was taken off life-support. “I was holding him when they ripped the tubing out of his body. They said it could be seconds, minutes, hours … but the only outcome they gave us was death,” she said. “Minutes turned into hours and we were so thankful to have time. We didn’t understand that dying is a process, we thought he was going to stop living at any moment. For two days, we were just on eggshells, we wanted to soak up every second with him. It didn’t feel real.”
Karter remained stable for two days. At that time, the couple was given the option to remain in the hospital or take the baby home for hospice care. Although it was a tough decision, the Goodchilds decided to bring Karter home. “I remember holding him in the back seat as my husband drove and thinking ‘don’t die, don’t die,” Goodchild recalled.
After one week at home, Karter’s eyes opened, and he started crying and screaming. Goodchild recognized the signs that her son wanted to eat, so she called their medical team to see if she could feed him. She was told she could try it, but Karter might not be able to swallow and could choke and die. She was also told that feeding him could prolong their hospice efforts.
“As a mom, my instincts were screaming to feed him. Now that I have reflected and I understand what happened to us, essentially the team was convincing me to starve him to death. That is essentially how he would die, he would just not get nutrition and his body would fade away and that would be the end,” Goodchild explained. “As a mom, if he doesn’t want to eat, I’m not going to feed him, but if my baby is screaming and wants to eat, I want to feed him.
“It was so excruciating as a mom to try to figure this all out.”
Goodchild followed her instinct to feed him, and he ate. Karter graduated from hospice care at 6 months of age, but the couple was told he might not live to his first birthday. Just before his first birthday, Karter was no longer able to eat and became dependent on a gastronomy tube.
“Once we made it to Karter’s first birthday, we were no longer focusing on his death, we were focusing on his life. We are going to give him the very best life possible, and so that has really been my mission as his mother, and for our entire family,” Goodchild said. “We had to undo a lot of the trauma. It took a lot of work on our end, reeducating ourselves, finding the right professionals to help us understand what all of this meant.”
Goodchild became determined to be a resource to other mothers who found themselves in a similar situation.
Giving back to other families
She launched a nonprofit organization called the Kourageous Karter Foundation. “I had all these aspirations and ideas, and then COVID-19 hit,” she said.
Though Goodchild has not been able to pursue many of the mission projects she has in mind, she has posted a robust collection of resources on the nonprofit’s website for families who are trying to navigate through similar journeys.
“I feel like my purpose now is to help other moms who are in my boat,” Goodchild said. “I feel the most empowered when I am connecting with other families and helping, and the only way I know how to do that is to share what I have learned.” Kole added, “Many people were there for us when we needed it the most. Now that we are further along in our journey, and this has become more of a normal part of our everyday lives, it’s important to make a positive impact on those who may be just starting theirs.”
One project Goodchild plans to accomplish this year is paying for photographs for a family. “We had a photographer who came to the NICU and took photos of (Karter) every day. She captured every single moment, and (the photos) are something I cherish. We didn’t know how much time we had. It was such a blur.” Goodchild recalled.
Another mission of the nonprofit is to create an all-inclusive playground nearby. Goodchild has agreed to be a part of the recently formed stakeholder group to help design and plan for the playground upgrades at Lions Park in Hugo.
“If you find yourself raising a child with a severe neurological condition, we want to be a place of hope and encouragement. We want to make sure that you feel like you are not alone, you are seen and there are so many great organizations and resources out there,” Goodchild said.
Karter is now 4 years old. Although some of the things the doctors predicted came true (Karter can’t walk, can’t talk and can’t eat), they failed to mention that he could live.
“It has not been easy at all. It has been really hard, in fact … There are so many wonderful things about him,” Goodchild said. Karter is a brother to Maddie, 6, and Gabby, 3.
“He gives us the gift of perspective every day. I wish I could cure his injury … I wish I could take all of that away. But he absolutely has quality of life, he absolutely has a purpose here.”
Lead Editor Shannon Granholm can be reached at 651-407-1227 or firstname.lastname@example.org.