The Story of Genevieve Mahoney
At the 20 week ultrasound appointment, Jenalee Mahoney and her husband were told their unborn daughter had a heart defect. Additional testing was done and a diagnosis of hypoplastic left heart syndrome was stated to the Mahoneys. This meant the left side of their daughter’s heart was not developing properly. Discussions began about what delivery would look like and the immediate need for their daughter to be flown to Michigan for a major heart surgery right after birth.
Weeks later at another appointment, the baby’s growth was measuring small and extra amniotic fluid was present. More specialists were consulted and her medical team requested that more tests be run. Jenalee was hesitant. She firmly believed God was going to deliver her baby perfectly and did not want the worry of additional tests. Her doctors were adamant and her husband agreed with the need to proceed with the tests. Jenalee hesitantly agreed.
Through genetic testing, it was discovered their baby was a positive mosaic trisomy 13, meaning an extra chromosome was discovered on the 13th gene. The biggest concern for the doctors was now that their daughter would not be viable with life. If she did survive birth, doctors described a grim reality of midline deformities and malformation of her limbs and face.
“How could that be right?” says Jenalee, recalling how she questioned the diagnosis. “On ultrasound she looked perfect.”
Jenalee and her husband told their immediate family. When Jenalee called her dad, he replied, “Well Jenalee, that is a lie. That is a lie from the devil, you just rebuke that right now.”
After the conversation with her dad, Jenalee and her husband decided to keep the diagnosis within their family. Jenalee remembers saying, “I am not going to speak that over her or allow others to speak that over her. I’m not going to believe it. I’m going to believe that my baby will be healthy and alive when she is born.”
Using music as a form of prayer, Jenalee took every opportunity she could to pray over her daughter. The lyrics of songs by Kim Walker-Smith, Kari Jobe, and Lauren Daigle spoke to her soul, giving her the words she needed to pray for healing over her daugher.
Whenever Jenalee heard one of these songs, she would hold her belly and sing to her unborn daughter. Lyrics such as from Kari Jobe’s Miracles, resonated deeply within Jenalee. The song goes, “The One who does impossible; Is reaching out to make me whole; Reaching out to make me whole; The One who put death in its place; His life is flowing through my veins; Life is flowing through my veins.” As she sang, Jenalee envisioned God’s healing flowing through her daughter’s veins in utero.
The months followed with countless meetings and appointments with specialists, many of which were negative. They spoke of the unlikelihood that their daughter would survive birth, and, if she did, the unlikelihood of finding a heart surgeon to do the surgery she was certain to need because her viability of life was so low.
“I just kept telling them, ‘What if you are wrong? You don’t know. What if she is born perfect and beautiful and we just get to go home from the hospital?’” recalls Jenalee of that heart wrenching time. “One of the doctors said to me, ‘Well, if I'm wrong I will buy you balloons.’ I replied, ‘Okay! I will see you with balloons!”
As the due date neared, a planned c-section was scheduled. Jenalee worked as a teacher and was finalzing her lesson plans for maternity leave late one night. About 9:00 pm she had just finished her preparation when the song, I Still Believe, by Kim Walker-Smith came on.
“I sat there and prayed and wept,” remembers Jenalee tearing up. “I had never really wept to that song before, but this time I had an overwhelming feeling come over me, almost like a weight lifting. Then I heard the voice of God say, ‘I’m done. She is ready.’”
When the moment ended, an exhausted Jenalee went to bed. Just as she was getting comfortable, she heard God’s voice prompting her, “Get up, pack your bags.” Jenalee sighed and thought, “No way. I am tired. I will do that in the morning.” She fell asleep. At midnight her water broke.
The operating room for Jenalee’s c-section was packed with hospital staff, all preparing for a critical situation. There was an eerie calmness in the space. Jenalee requested that her songs be played in the background while her daughter was born.
Without complication, their daughter Genevieve was born and much to the staff’s surprise she cried! She came into the world with beautiful pink coloring, not the purplish-gray that was anticipated by the doctors.
The team rushed her away to check her over. Seeing that she was okay, the doctor quickly declared, “Bring her to her mother! She is fine!”
Genevieve had no physical features of Trisomy 13 whatsoever. The doctors were in shock. Once Genevieve had a chance to bond with her parents, the doctors took her for more testing, and all of the most critical concerns came back fine. She didn’t even need oxygen.
As Jenalee went into recovery, her husband went with Genevieve to the NICU. As he walked through the halls with a big smile on his face, the nurses were asking each other, “Why is he so happy? What is going on?” His reaction surprised them as they had been prepared for a critical situation with a terminally ill baby. The staff celebrated the miracle with the Mahoneys.
An ECHO was performed on Genevieve which confirmed she did not have the hypoplastic left heart syndrome as they previously thought. She did however have two holes in her heart, a large VSD and a smaller ASD.
“When we heard that, it all came together for me,” shares Jenalee. “The night before she was born when I was singing that song over her and heard the voice of God, in that moment he fixed her heart.”
Genevieve was a miracle. Doctors would stop in to look at her fingers, her toes, her ears – checking for all the physical characteristics of Trisomy 13 and they couldn't find anything. They were stunned.
Jenalee was able to begin nursing Genevieve. That led to a swallow study discovering that she had a soft swallow. She had to be fed through a feeding tube and then a GI tube until she grew stronger. She stayed in the NICU for a month and had surgery to get the GI tube before she was able to go home.
They waited four months to see if the holes in Genevieve’s heart would heal on their own. When they did not, plans were made to go to Michigan for the heart surgery she needed. This heart surgery was not as extensive as what was initially expected with their original diagnosis, yet it was still a significant surgery to repair the holes in her heart.
At four months old, Genevieve had the surgery which went as expected. After surgery, however, her lungs had issues with the change in pulmonary pressures. What was expected to be a 10-day stay in Michigan grew to 41 days before the family made it home again.
At home, Genevieve was getting stronger. She was weaning off medications and doing therapies to improve swallowing and strengthening after the heart surgery. “Everything was going great!” recalls Jenalee.
After a few months of being home, Genevieve became sick. A trip to the doctor discovered she had pneumonia in her lungs and she was sent to the hospital in Sioux Falls where they learned Genevieve had contracted RSV, a respiratory virus.
On day six or seven, Genevieve was struggling to breathe. Needing additional help, she was placed on a ventilator in the PICU. When that wasn’t enough support, she was moved to an ECMO machine. Yet, she was still unable to recover. Genevieve passed away at eight months old from RSV.
“This was a girl who was a miracle, after a miracle, after a miracle,” says Jenalee with tears in her eyes. “I have a really strong faith. My mentality was always, ‘I believed she would be fine and so she will be because I say so! As her mother I have the authority over her through God that she will be fine, and she will!’ Then here I was with my baby on ECMO. Every day I continued to tell her, ‘You are fine. You are good. You are healed.’ But this time, I didn’t get my one more miracle. I question, why couldn’t we have had one more?”
Knowing she was high risk, Genevieve had even been vaccinated against RSV. Jenalee struggled with how this occurred. “It was really hard for me. Even after they told me she wasn’t going to make it because her systems were shutting down and they took the ECMO machine off. I still hoped that she would breathe and open her eyes and just be alive. I refused to say goodbye. I just had that strong belief that she would be okay.”
Jenalee admits she wrestled with the whys for a long time, continually asking Why didn’t my faith work this time?
“It took me a long time to realize that isn’t the case,” she reflects.
Jenalee describes the way her faith has ebbed and flowed since Genevieve’s death in 2019. “In the first year, everything was still new. Everything was still a first. It was a first Christmas, a first birthday, a first holiday, a first family vacation. Everything was a first. All of those firsts were very hard. I spent a lot of time looking at pictures and videos. My mind was consumed with grief and thinking of everything over and over again. Daily functions were hard. Working was hard. I couldn’t even comprehend things. I put the milk in the cupboard instead of the fridge many times. Driving down the street, I felt like people were looking at me because they knew my baby died. No one knew. It was just this weird feeling and everything was new.”
“After the first year, the grief changed to now nothing is new there will never be a first again. That bothered me. I felt like that was another loss. I felt like now there is never anything new ever again for her. Now I don't dwell as much. I can function more. The brain fog has lessened. My grief looks different.”
Nowadays, the family, including Genevieve’s siblings, Natzali, Giani, and Stella, look for ways they can honor Genevieve’s memory to help them through their grief. They donate pajamas to the Ronald McDonald House because that is what they received when they were in their care. They have chosen a toy that Genevieve loved and bought and gathered as many of them as they could to donate to the Child Life program at Sanford Children's Hospital. They actively look for ways they can keep her memory alive in their lives and in other people’s lives by doing acts of kindness to remember her.
Jenalee goes on to share other ways they keep the connection strong with Genevieve. “We have a special place in our home. It is a little table. A candle made out of the flowers from her funeral. It has her pictures. It has a teddy bear made out of her clothes. A pacifier and her favorite little bunny and her blanket. It is her little corner. It is just a reminder she is always with us.”
Jenalee also finds comfort in tending to Genevieve’s gravesite. “It feels like a caregiving act. I make sure it is clean, I pull the weeds, I decorate it for holidays, and we planted a tree there. I can care for that space of hers which feels good to do.”
“Genevieve brought people together,” shares Jenalee about her daughter, “She taught people a lot in her life. She taught doctors that a patient isn’t just a patient, they are a person with a family who loves them. It is important to see a patient as a life that is loved, not just a medical situation. She taught a lot of doctors that. Everyone that met her loved her and couldn’t say enough about how her eyes spoke to them. That they could just feel her soul when she looked at them. She touched them.”
Originally published in Gritty Faith Volume 15 as part of the With Angel Wings Feature.