Sara Stadem | Editor
There are many emotions and plenty of planning that goes into getting ready for adding a baby to a growing family. What one might not plan for is a life-changing disorder.
Mariah Fallon, originally from Hartford, met her fiancé Malakai her senior year of high school. Malakai, originally from Michigan, has now lived in South Dakota for about ten years.
Malakai and Mariah found out the exciting news of their pregnancy in November of 2018 and what followed was anything but easy.
“I had a rough delivery,” Mariah recalled. “I was induced on Tuesday, July 30 at 9 am. They were slowly trying to dilate me. Around midnight they broke my water. They gave me Pitocin to help me fully dilate; however, whenever I had that in my system Leighton’s heart rate and oxygen level with drop.”
Mariah continued to explain that Leighton’s heart rate and oxygen level kept dropping throughout the entire night and into the next day.
“The nighttime midwife was pacing back and forth around my room wanting a C-section done. She looked very nervous and it scared me. She said that she was having a cesarean doctor looking over my monitoring strips and they might go forward with doing a C-section,” Mariah said.
Despite all of that, Mariah did not deliver Leighton until Wednesday, July 31, 2019 at almost 3 pm.
She recalled prior to delivering Leighton, “My water was broke for about 15 hours while Leighton was still inside and his heart rate and oxygen level were dropping. They had me on an oxygen tank throughout the night to give him oxygen.” She continued, “They also had to enter fluids into my stomach to keep him safe because they broke my water too soon.”
After Leighton was born, the NICU team was there to check on him. Mariah explained once they got him checked over, they took their family to their family suite. The nurses took Leighton into the nursery so that Mariah could get some much-needed rest.
Mariah waited for the nurses to bring Leighton back in around 1 am to breastfeed which was the plan. However, when the nurse returned, she did not have Leighton with her. Mariah was told they were having trouble keeping his body temperature up so they then had to admit him to the NICU. Soon after, the NICU doctor called to inform them that Leighton was having seizures and an hour later, the update was the same.
“Right away that morning we got up and went and saw him. His head was all wrapped in wires and bandages, there were stickered wires throughout his body,” Mariah said. She continued, “It completely broke my heart. Leighton was having all different kinds of seizures. And he continued to have those seizures for the next two weeks. He would have three to five every hour.”
Within the first 24 hours that Leighton was born, he had an MRI done while in the NICU to confirm his diagnoses of epilepsy.
Mariah recalls their experience in the hospital as an uphill battle, very challenging. “Doctors were giving us false information, everybody had different rules.” Mariah indicated she felt like she wasn’t getting the truth about what was going on.
After what felt like a very long month, Mariah said Leighton finally got to go home but on an extensive list of medications.
This wasn’t the end for their new family. When Leighton was about three months old, Leighton ended up being admitted into the hospital twice within two weeks due to a face rash.
From there, Mariah and Malakai found out that Leighton had cerebral palsy when he was around six to seven months old. Mariah explained that cerebral palsy has left Leighton’s right side of his body a lot weaker than his left side. He has had many EEG’s done over the past year a half and has been receiving therapy from the birth to three program two to three times a week. Leighton will soon advance to getting his therapy through Lifescape.
Mariah explained that Leighton’s daily routine starts at 6 am. “At 6 am, Leighton has to have his seizure medication and acid reflux medication. After that he goes to sleep for a little while.” She continued, “When he wakes up, we do some therapy. He also gets his Vitamin B6 and Miralax. He has had constipation problems since he was born.”
Leighton has a few different therapy chairs, according to Mariah, so they alternate between those throughout the day. “Leighton eats every three hours roughly. Unfortunately, he is not growing well. He is still drinking the same amount of formula as he was when he was one month old,” Mariah said. She continued to explain that the doctors are giving them different things to try in hopes to help with his weight gain. However, he is currently only 19 pounds.
Therapy wears Leighton out so he needs more sleep than a normal child his age. He takes a 30-45 minute nap every three and a half hours, according to Mariah. “So, we just jump around from therapy, eating and sleeping throughout the day,” states Mariah.
With the diagnosis of cerebral palsy, many things have changed for Mariah’s family. While Malakai is still working as a foreman at Journey Group, Mariah had to quit her job at Sanford to be a stay-at-home mom. Due to Leighton’s appointments and therapy, Mariah had to be available to balance all of it. Mariah has recently started working with Malakai’s mom at Dakota Digital on a part-time basis to help save extra money for Leighton’s much needed leg braces. Mariah also has been doing photography to help supplement income for the medical expenses.
Currently, Mariah and Malakai live in Brandon with her grandparents as they had to move out of their own place due to all of the medical bills they were receiving. “It has been a struggle. Our families have played a huge role in everything we have been through, they have helped us financially and emotionally. They have been there for us through everything. I don’t know where we would be without them,” Mariah stated.
She went on to say, “It has changed our lives as a family tremendously. And it never seems to get easier. We are always receiving bad news. Malakai and I try very hard to pick one another up on bad days.”
“All of this definitely changes what we thought our future would look like. Because of everything that has happened to Leighton we are now afraid to have more children. The doctor said there is a 25% chance that this could happen to our next children because they think this is all genetic.” Mariah continued, “But they have done every genetic test there is to be done and they have all come back negative. Another fear of ours about having another child is them not feeling as important because Leighton needs our attention and time all day long. This definitely changed my life; I was 19 years old when I got pregnant with Leighton and I was 20 when he was born. As a young mom having a baby with all of these medical problems is one of the hardest things I’ve had to take on in life, and I’m afraid that this is just the beginning.”
Now Leighton is in need of leg braces, Mariah explained, which will cost thousands of dollars. Mariah continued to explain that he just had another MRI done a few weeks ago which resulted in her receiving a devastating phone call with the results.
“Leighton has Encephalomalacia. It is one of the more serious brain injuries. It means Leighton’s brain will never reconstruct itself, and there is a high chance he may have to use a walker or a wheelchair throughout his life. There is also a possibility he may need a feeding tube placed due to his growth.”
The financial strain has also impacted their life together. Malakai and Mariah had set their wedding date for October 16, 2021. However, the realization of how much the leg braces are going to be for Leighton, along with the other medical expenses, could potentially change their wedding plans.
“We had to push our wedding off because what kind of parents would we be if we spent thousands and thousands on a wedding when our baby needed our help,” she clarified.
Unfortunately, they have not been able to get any medical assistance through Medicaid despite applying several times. So, the Hartford South Bar decided to help out.
“I got a phone call one day from my mom saying the Hartford South bar was planning on throwing a benefit for leading to help raise money for his leg braces that he desperately needs. Of course, we started crying, because we have been denied lots of help. This benefit will help raise the money we need to get his braces which are between $3-$4000,” Mariah said.
Mariah concluded, “If there is anything I have left to share, it is the difficulty receiving the help our baby boy needs. He is being denied so much help because we cannot receive any help from the State. It is very heartbreaking. If there is anyone who can help us, we would really appreciate it. All we want is to be heard and feel like someone cares about our family.”
Leighton’s fundraiser will be held on Saturday, Feb. 27, at the Hartford South Bar as an Adult BINGO fundraiser from 5-7 pm. For more information, check out the Facebook page Adult Bingo Fundraiser – Legs for Leighton.