By Scott Thompson
MEET THE breastfeeding advocate mum who was ROBBED of the experience when her BABY GIRL was born with an INCREDIBLY RARE SYNDROME that affects the size of her mouth and means she needs to be fed through a tube – and admits that she struggles to bond with her child.
Stay at home mum of two, Makayla Butcher (24) from Ripon, California, USA met her USA army personnel husband, John Butcher (26) at university in 2012 and fell in love quickly. They got married in August 2013 when she was just 19.
John was stationed in Colorado, USA so the newly-weds moved and Makayla worked as a nanny while gaining her certified nursing assistant (CNA) licence. She then worked briefly for a home health care agency before John was relocated to Hawaii.
In Hawaii, Makayla trained to become a birth coach and she completely fell in love with pregnancy and fertility. Makayla has polycystic ovary syndrome (PCOS) which impairs the ovaries from working regularly. But after three years of treatment she became pregnant and gave birth to her first child Charlotte (2) in January 2017.
When Charlotte was just one year old, Makayla started taking on clients as a birth coach and loved every minute of it, but within a few short months, to her surprise, she found out she was pregnant again.
At her 20-week scan, the medic left the room and returned with the high-risk obstetrician (OB) who specialises in childbirth. He pointed out several abnormalities to the baby’s face, hands and spine. The medics took a blood sample to test for different syndromes and booked her a follow up appointment for the very next day.
Juliette was born on February 12, 2019 and while still in the hospital, Makayla’s mother-in-law is a nurse and she would discuss her condition with her friends who were doctors and that was when they first came across Freeman Sheldon syndrome and the family got a diagnosis they could work with before even leaving the hospital.
Freeman Sheldon syndrome is an extremely rare disorder that usually isn’t genetic and happens randomly in individuals. It’s caused by a mutation of the gene that makes myosin which is important for muscle tensing. The mutation causes joint deformities, limited use of hands and feet and facial abnormalities – such as pursed lips and a small mouth.
“I’m a 24-year-old mum of two girls and a wife of nearly six years. I grew up in Ripon, CA and met my husband at university in 2012. We got married in August 2013 when I was 19. My husband is in the army and he was first stationed in Colorado, USA. While he was deployed, I worked as a nanny while I got my CNA license,” Makayla said.
“Once I got my licence I worked as a home health carer until we moved to Hawaii and I started learning to be a birth doula. Through all my research on pregnancy and fertility I completely fell in love with the profession.
“I’d tried to get pregnant myself for three years but was struggling due to having PCOS, but when we got to Hawaii, I continued using fertility treatment and became pregnant with my first daughter and gave birth on January 15, 2017.
“When Charlotte was just one year old, I started taking on birth clients and loved it so much. Then literally just a few months later I fell pregnant again.
“We couldn’t believe it. We were totally shocked. We didn’t even think it would be possible without help.
“When I went for my scan my husband was at work training, so I had to go alone. The ultrasound technician spent a very long time getting the images and excused herself to get the high-risk OB who was working in the office that day.
“When he came in the room, he pointed out her jaw, hands and spine to me. The medics took blood tests to check for a range of possible syndromes and I was asked to return the next day.
“I left with my daughter and got us into the car and I just completely broke down crying. My husband called me while I was still in the parking lot to see how the appointment went and I had to tell him, while crying my heart out, that something was wrong with our baby.
“John was released from training right away and he was already home waiting for us when we got home.
“Our beautiful girl, Juliette was born on February 12, 2019 at 02:57am and weighed 8lb 8oz and was 20 inches long.
“Before we left NICU the geneticists took more blood samples to test for syndromes, but my mother-in-law is a nurse and she asked her Dr friends at her hospital. She came back to me with an article on Freeman Sheldon syndrome. Its description felt very spot on and when we got her diagnosis, I wasn’t surprised. We were just relieved that we knew what it was and were able to move forward from there.”
Juliette has limited use of her hands and a curve in her spine which she is being treated for. But she was also born with a small mouth and other facial abnormalities.
Makayla is a big advocate for breastfeeding and wanting nothing more in the world than to be able to breastfeed her new-born girl. When she realised she wouldn’t be able to, she at least hoped to bottle feed her but sadly even that wasn’t an option and she had to be tube fed.
“Physically she is limited by her hand movements, but we are working with an occupational therapist who makes her hand splints and she is getting better every day,” she continued.
“She has a curve in her spine which makes doing tummy time a little more difficult, so building her core strength is an ongoing process.
“Juliette has difficulty processing liquids, including her own saliva, so she is tube fed until she is cleared to eat by mouth. Sometimes she can choke so we need to be on alert just in case.
“The hardest thing for me as a mother has got to be the feeding tube. It’s been a big struggle. It hadn’t even occurred to me until late into my pregnancy that a tube would even be a possibility and I’d so hoped to be able to breastfeed. Then I’d even hoped to bottle feed her, but sadly neither were a safe option.
“Being a birth worker, I have the opportunity to teach new parents the importance of breastfeeding and it’s many benefits which includes bonding with your baby. For me there are very few things that come close to the closeness you develop in a breastfeeding relationship… it’s incredibly special.
“This bonding time I have with her at the moment feels very clinical because it’s like I’ve been a nurse for the last five months. I’m still trying to find my balance. Breastfeeding my first daughter came very naturally for me, but Juliette follows a every three-hour pumping schedule.
“I decided to exclusively pump as my way to make sure she is getting the very best I have to offer her, but it still takes its toll when I sit down to pump and wish I could just scoop her up in my arms and feed her myself.
“The tube is what is keeping her thriving, but it breaks my heart as a mum for her to have this tube on her face. But it’s how we keep her fed and growing and for that I’m thankful.”
Juliette has the same mentality as any other five-month-old baby. There are no delays. She has also not needed any surgeries. She is incredibly easy going and has the cutest smile that melts hearts all around.
Makayla recommends anyone in a similar situation to find other people going through the same thing and learn from them.
“We are lucky that she hasn’t needed any surgeries. She is the most relaxed baby. She’s happy and always babbling and bouncing around. She loves stretching and pulls the sweetest tiniest little smile,” said Makayla.
“Her strength and temperament are amazing. With everything she has to deal with she still rarely has a bad day. She’s always smiling and makes everyone else happy in the process.
“She’s just simply an amazing little girl. Yes, I do need to be more intentional with her as I can’t always offer automatic cuddles and bonding time from breastfeeding or even bottle feeding. We don’t let that get in the way too much though.
“We always make sure she gets all her play and quiet time in with me and her sister. My husband and I take turns as often as possible to give each of our girls one on one time and he takes a lead on a lot of Charlotte time to make sure I have an opportunity to spend some uninterrupted time with Juliette.
“If you’re in a similar situation to us then go and find others you can talk to and learn from. Education is your super power.
“Also, remember that it’s OK to feel sad or angry but don’t stay in that place too long. Feel it, release it and go and be the amazing parent your loved one needs you to be.”
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