Bringing up Betsy
Betsy Firman was born in September 2020 with an extra copy of chromosome 21. She has Down syndrome and after finding a lack of information available about the condition, her mother, Lea-Anne was inspired to start an Instagram account documenting Betsy’s journey entitled ‘Bringing up Betsy’ which has since become something of an internet sensation.
Lea-Anne hoped that by telling Betsy’s story she might encourage parents in similar circumstances to share their experiences, challenge misconceptions and prove that life can still thrive and flourish despite having Down syndrome. ‘Bringing up Betsy’ is a time capsule of all the ups and downs that the family have had to face over the past couple of years.
As is the case with most babies born with Down syndrome, there are a number of common health conditions that often present at birth. These can range from ear and eye infections, thyroid issues and heart conditions which around half of all Down syndrome children suffer from.
During the first four months of her life, Betsy was subjected to many routine tests and visits to her local hospital but in January 2021, an ECG scan of her heart revealed that she had an AVSD (Atrioventricular septal defect), resulting in two holes in the central wall of her heart which would require open-heart surgery to repair.
Lea-Anne recalls the day that Betsy was referred to Birmingham Children’s Hospital. She said: “Our first visit was during COVID restrictions and I was quite nervous about not knowing our way around but everyone we met couldn’t have been more lovely. They checked Betsy’s weight, her oxygen sats and she had another echo scan and ECG. The staff were great and answered all of my questions and left me feeling quite reassured.”
The date for Betsy’s surgery was organised within six weeks of the diagnosis. On arrival at BCH the night before the planned operation, Betsy was taking it all in her stride. She had no symptoms and was not ill despite having two holes in her heart. Lea-Anne describes the build-up to the surgery, she said: “It was the worst part. We’d had one knock after another and it was quite terrifying having the fear of the unknown.”
While in the hospital, Lea-Anne met another ‘Heart’ mum who was there at the same time and they were able to chat and share their experience together. Lea-Anne had also made contact with Young at Heart, a charity that works closely with BCH to support parents whose children are undergoing major heart surgery. They were able to offer further reassurance and answer questions about what to expect prior to the surgery taking place.
Betsy’s surgery lasted around five hours during which time Lea-Anne and her partner Tristan spent some time in Birmingham city centre to try to keep their mind off what was happening but also remaining close by.
The days that followed would prove to be challenging as Betsy required a temporary pacemaker and struggled with her temperature. There was also some concern that her kidneys were failing as well as blood pressure that was up and down. She remained in the PICU (Paediatric Intensive Care Unit) for five days under constant supervision before moving to Ward 11 for the remainder of her ten-day stay in hospital.
Looking back at those ten days, Lea-Anne said: “The nurses were fantastic and showed us around PICU before Betsy’s operation so we could see where she would be after the surgery. Justine Kidd, Cardiac Liaison Sister was also extremely supportive and a really friendly face who still recognises us whenever we return.”
Betsy, who turns 18 months next week, has recovered incredibly well from her surgery. Her hospital check-ups are now one year apart, a positive sign that things are well and she no longer requires heart medication.
Her Instagram posts show she is a very happy and smiley little girl who has captured the imaginations of her over 6,000 followers from as far afield as South America. Her account has brought together many families who are on a similar journey and is a lasting document of her life growing up that she will be able to look back on with pride.
Lea-Anne said: “When we found out Betsy might have Down syndrome we questioned will she be well? Will she be healthy? This is what worried us most, but Betsy is beyond incredible. The strength and courage that Betsy showed while in hospital was unbelievable. She amazes me every day! We can’t thank the staff at BCH enough and we are so happy to have met some amazing mums along the way!”