Come What May, I Will Love You Until My Dying Day

Tonia was pregnant again, and thrilled. She’d wanted to be a mother all her life; she wanted half a dozen kids. She told me she was happiest when she was pregnant. I don’t remember why she took all the prenatal tests–were there some signs that pointed to a need for testing, or was it just something her doctor did? Whatever the case, they discovered the baby had Patau Syndrome, or trisomy 13. Trisomy 13 is a genetic disorder that occurs when cells divide abnormally during reproduction and create an extra 13th chromosome. The extra chromosome causes severe physical and mental problems.

Trisomy 13 babies are born with a low birth weight. They have brain structure problems which affect facial development; they may have a cleft palate or even a double cleft palate. Their eyes are close together, sometimes even fusing into a single eye. Depending on the severity of the palate deformity, they may have a deformed or missing nose. The skin may not be fused over the brain or abdomen. They may have extra fingers or toes, or the fingers and toes may be fused together.

80% of babies born with trisomy 13 don’t survive past their first month. Median life expectancy is 7-10 days. Most of the babies that survive past the first month don’t survive past their first year. The rest usually pass away by their teens. There is no cure for trisomy 13; only mitigating treatment. Patau babies have congenital heart defects, chronic breathing problems, hearing loss, high blood pressure, trouble digesting, severe intellectual disabilities, neurological problems, and seizures.

Trisomy 13 is very rare, and not inherited, instead being a random event in early fetal development. Chromosome abnormalities occur more frequently in the pregnancies of women over 35. Tonia was 24.

Tonia and Mike were given the choice to terminate the pregnancy. Tonia wouldn’t. She couldn’t. She already loved this baby, created from her and Mike, a baby she wanted with all her heart. Tonia, Mike, and the doctors discussed their options and a plan was put in place: When Tonia reached her eighth month of pregnancy, she would be taken to the Mayo clinic to deliver there. A team of pediatric surgeons would be waiting to take the baby and treat her as soon as she was born.  Tonia and the baby would stay there until it was safe to come home. At home, the baby would be closely monitored and given any surgery and/or therapy needed to ensure her survival. 

This was going to be a family undertaking. There were going to be times when AJ and Kelsie would have to be taken care of while Mike and Tonia were with the baby in the hospital. We were all going to have to learn to care for the baby so Tonia and Mike would have help and rest. Since all the cousins were close in age and were attending the same school, I said we’d just set up space in our house for them so it wouldn’t be a big ordeal when they had to stay; it would just be their second home. Joyce said she’d take AJ, but Tonia said she felt her girls should stay together, and Joyce could take all the kids to give me a break when I needed one. Sean and his girlfriend Tammy would babysit when needed and Sean offered to help with cooking and cleaning at everyone’s houses.

We began preparing. Tonia did everything her doctor told her to do to ensure the baby was as healthy as possible before she was born. Tonia and Mike named the baby Faith. Around the middle of her seventh month, Tonia woke up bleeding. I came and got her girls and Mike took her to the hospital. By the time they arrived, labor had begun. It was too late to get them to the Mayo clinic, so it was decided Tonia would deliver in Minot and she and Faith would be medevac’d to Mayo as soon as it was safe to do so. 

Tonia labored most of the day without medication. Late in the evening, the doctor tried to give her pain medication and she told him no; she wanted to give Faith the best chance she could, so she didn’t want drugs. The doctor told Tonia, “I think we’re past worrying about that now.” 

And that’s how Tonia found out Faith had died.

Faith was gone before she was born. When she finally arrived, she did have a cleft palate, but her little face was beautiful. Beyond her face, though, she had several catastrophic birth defects that she couldn’t survive. 

Tonia requested that everyone wear bright colors to the funeral; she didn’t want Faith surrounded by black. It was a closed casket service to preserve Faith’s dignity. I made Faith a little lacy pink dress to be buried in and made a matching bonnet for her poor little head. I was worried about her little toes being cold, so Joyce got some lacy pink socks for her. Nita came to the funeral. She hadn’t come to either my or Tonia’s weddings, but she came to Faith’s funeral. I believe she wanted to help Tonia and of all the women in our family, she knew the most about losing a child in labor.

Larry came to the funeral too. He left Lynne at home. He told Tonia he was glad she hadn’t had an abortion; it was against god’s plan. I asked him if it was his god’s plan to have a baby with such a devastating disorder, to have  a baby that was so loved and wanted die, to make my sister suffer so. I told him his god was cruel. Joyce told me not to pick fights. And we buried Faith Marie.

Joyce wouldn’t leave Nita alone with Tonia. She kept telling Nita she was in the way, she was crowding Tonia. She told Nita she wasn’t needed and Nita went back home a day after the funeral. I don’t know when Larry left. Every time I looked at him, I wanted to spit. Tonia hadn’t seen him since we drove away from Holt in Ruby Mae’s car. He hadn’t called, he hadn’t written. He’d told me he didn’t care what happened to Tonia. Yet here he was with big sad eyes, preaching god’s will to Tonia, who was nearly catatonic with grief. He made me sick. Sean was happy to see him though, and they kept in touch after that.

Joyce took AJ home with her so Tonia could rest. I took Kelsie and told Tonia it was just for the night. I wanted her and Mike to have time together. I wanted them to sleep.

Tonia never got over losing Faith.


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