Two-year-old Robyn and her family have been using Little Havens since her mum, Maxine, was pregnant and found out that Robyn had a complex heart condition called hypoplastic left heart syndrome.  

Robyn’s family describe her as a typical toddler, running around and enjoying playing which sometimes means that her condition can be invisible to a lot of people. Maxine said: “A lot of people comment that she looks really healthy, and she looks really well but when she did have her feeding tube it emphasised that she isn’t a typical child and there is something else going on.   

“Robyn seems well at the minute because her heart function is so stable but by the time she gets to school, we are expecting her to tire really quickly and not be able to keep up with her peers and be really breathless because her oxygen levels are affected by her condition.”  

Robyn’s condition means that the left side of her heart will never develop. Without surgeries, Robyn would have had a matter of weeks or even hours to live. Luckily Robyn was born healthy enough to undergo her first surgery. Since then, she has also undergone another surgery, and the family is hoping that she can have a third operation within the next couple of years.   

During pregnancy, Maxine’s hospital suggested she get in touch with her local hospice, and she was already aware of Little Havens. “I remember ringing up, crying down the phone explaining what the situation was. And I can’t remember who answered the phone, but they were so, so lovely, and invited us in and they offered to come and have a chat at home and explain what services could be offered.”   

One of Maxine’s main priorities was support for Nathan, Robyn’s older brother. This was one of the main reasons for their referral to Little Havens, to receive specialist emotional support for the whole family.  

Contacting Little Havens during pregnancy allowed the family to have a safe space immediately after Robyn’s birth.   

Maxine, Robyn’s mum, said: “It was really good because it meant by the time that she was born, they kind of half knew what her care needs would be, and it wasn’t all that daunting. It was kind of nice having another party of people that were prepped and ready to meet her before she was here.”  

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Published in 2024