Chloe's additional needs

Chloe was born four weeks early, and she failed her newborn hearing screening. The lady that did the screening explained that we would be called to repeat the test after her due date.

The first real sign of concern with Chloe was at two weeks old when she had reflux. She was put on three medications and thickened formula to help her keep her milk down.

At four weeks old, she failed the hearing screening again, and by six weeks old, we knew Chloe was permanently deaf. She got her first hearing aids soon after.

There were lots of hospital appointments. On top of the hearing tests and hearing aid appointments, she also had heart ECGs and liver and kidney scans. While these all came back normal, it gradually became clear that there was more going on with Chloe.

As Chloe got older, her muscles were very weak. At six months old, she couldn’t hold her head up, and her reflux was getting worse. She was diagnosed with gastro-oesophageal reflux disease (GORD).

At eight months old, Chloe’s Teacher of the Deaf accompanied me to see a new paediatrician, who finally agreed Chloe wasn’t meeting development milestones. He also noted some physical features such as single palmar creases, a small jaw and low-set small ears. He ordered genetic testing to be done.

The results showed that Chloe has a microdeletion on her 9th chromosome – 9p24.3.23. This is known as 9p minus syndrome. The geneticist couldn’t give us much information as it’s so rare, affecting just one in 50,000 births.

9p minus syndrome can cause many issues – physical, developmental and behavioural. Chloe’s main symptoms are global development delays, learning disabilities, autism, hypermobility and hypertonia, which cause her some mobility issues. However, Chloe’s deafness is not related to the syndrome.

It was hard not knowing what to expect. The charity Unique helped us connect with the 9p minus network and find other families with children like Chloe.

Chloe couldn’t sit unaided until she was 14 months old, and she didn’t walk until she was nearly 3 years old. One of the trickiest issues was her speech. No one knew how much of her speech delay was from her deafness and how much was from her syndrome.

Chloe’s specialist speech therapist and Teacher of the Deaf worked hard, seeing us weekly and using British Sign Language (BSL) alongside picture cards and speech therapy. Chloe started to use speech from the age of three, but because she had also been exposed to BSL, she was never frustrated by struggling to communicate. Even now Chloe will sign if people aren’t understanding her speech.

Chloe started off on a dual placement between a mainstream school and a special needs school. This worked really well for her during reception, especially with supporting her communication. In Year One, she moved full time to the special needs school, which she still loves attending.

Having a deaf child with additional needs does have its issues. There are times that we feel a little on the outside of both worlds. We have wonderful local deaf children's societies close to us, but sometimes activities aren’t suitable for Chloe because of her mobility issues or because she is several years behind cognitively, so can’t join in with some of the activities aimed at children her age.

At school, we use her Education, Health and Care (EHC) plan to ensure her hearing needs are met. Her Teacher of the Deaf visits regularly to ensure her equipment is being used correctly, that she is at the front of the class, that she has teachers that can sign with her and so on.

It’s often her additional needs that need to come first to ensure her safety and help her understand what's happening, but her hearing needs have to be remembered too.