I remember well standing in special care soon after Rosie was born, talking to the consultant about where we wanted her follow up care to be. He used terms such as ‘SALT’ and ‘OT’ which meant nothing to us.
All we were concerned about at that point was getting her home, how her heart condition would progress, and her feeding problems.
So, for those new parents, and those with an interest, here’s a beginner’s guide to the medical experts you might come across.
Child development clinic
These are experts in child development, and will support those children with development needs. Our local one has Consultant level care, supported by junior doctors, specialist nurses and staff nurses. This team is responsible for carrying out Rosie’s annual check, reviewing her overall health and development, and accessing specialist care.
For Rosie, they are acting as a coordinating point for her feeding tube, they request annual blood tests, and they’ve ensured she’s seeing all the specialists required.
Rosie’s acute medical requirements (as opposed to her chronic – long term ones) are dealt with at the ‘normal’ children’s ward. For us, that’s been her failure to put on weight, vomiting, and her many bouts of bronchiolitis, pneumonia and viral wheezes. Rosie has open access to this ward, meaning we can phone up and attend directly if we have concerns, rather than go through A&E or the GP. The care she’ll receive at the ward tends to be focused on the symptoms she’s presenting with at that time, rather than her longer term concerns.
Our GP is an important part of Rosie’s life, as it is for any child. The surgery organise her routine vaccinations, prescribe her regular medications, and we see her GP for normal childhood concerns. Over the past year this has included conjunctivitis, ear infections and skin rashes. So just the usual 1 year old baby health problems – Rosie is really no different from a ‘normal’ baby in so many ways.
I sometimes feel ashamed at how often we’re at the surgery, but actually having a good relationship with a trusted GP is crucial for a kid with Down’s Syndrome. We are fortunate to have such a good surgery.
All babies and infants have a health visitor. They are qualified nurses or midwives who then undertake additional training to become specialist community public health nurses. In plain English, they look after pre-school children, supporting them and their families.
We have been blessed with a wonderful Health Visitor. She came as often as weekly to check on Rosie before and after her heart surgery, ensuring she was putting on weight and reviewing the healing from her heart surgery. She also kept an eye on me, as I had post-natal depression after S’s birth. My health visitor weighs and measures Rosie, plotting her growth against the Down Syndrome growth charts, and she’s put in various referrals to other services, and carries out development checks.
As children with Down Syndrome tend to have lower muscle tone, and hypermobility (very flexible), they may require additional support to learn to sit, stand, crawl, walk, or even hold their head. This was especially necessary for Rosie who had spent the first 4 months of her life in a hospital bed, coming out at 4 months with the muscle tone of a newborn.
Regular physio exercises have strengthen Rosie considerably, and she’s doing really well now. She’s just learned to sit up from lying down. We have found that by building her core strength up, it’s freed her to develop new skills such as waving, fine motor control and feeding herself.
Occupational Therapists (OT)
OT’s essentially support your child in living as normal a life as possible. This could be through arranging for specialist equipment to support your child in doing essential daily activities. This might be as simple as a bath seat (the penguin bathseat transformed bathtimes for Rosie), through to wheelchairs, specialist seating, walking frames etc. OTs also teach techniques to enable your child to achieve crucial life skills such as getting dressed.
Dietitians work with parents to ensure that your child has a suitable diet and is gaining weight at the right pace for them. A child with Downs Syndrome will see them if they have heart, lung or digestive conditions, or you’re anxious about their growth.
Rosie has been under hers since just a few weeks old, as her heart condition meant she was very slow to gain weight, and then started to lose weight. Dietitians were crucial in helping her to get the necessary calories in, working with me to ensure she had the right balance of fortified formula and expressed breastmilk.
More recently, she has also helped us identify a dairy intolerance and prescribed a specialist formula for her. As Rosie’s weight gain is still slow, she continues to work with us to help her gain weight, and reassure me that Rosie is growing well!
Speech and Language Therapy
Speech and Language Therapists support children in communicating, as well as in their feeding. Almost all children with Down Syndrome will require input from a Speech and Language Therapist (SALT) before they reach school age.
In addition to supporting speech development, they provide access to Makaton training to aid communication for the whole family. For some children with Down Syndrome, they may need support in feeding and drinking. Rosie has an unsafe swallow, which was diagnosed by a SALT, and she has regular SALT reviews to advise on how best to support her to drink and eat.
You are extremely lucky if you live in an area with portage! Unfortunately we don’t have it in East Sussex anymore.
Portage is a home-visiting educational service for pre-school children with SEND and their families. They work with families to develop a quality of life and experience, for themselves and their young children, in which they can learn together, play together, participate and be included in their community in their own right.
Audiologist will check on your child’s hearing. All children with Down Syndrome should have the full newborn hearing test, which will provide an early indication of any hearing loss. This should be followed up by a hearing test at 10 months, and yearly review thereafter. This is because people with Down Syndrome are likely to be affected by hearing loss during their lives.
Rosie has had hearing tests at birth (day 1, and then a fuller one before discharge from special care), 6 months, 1 year, and from now on she’ll be seen regularly (every 3-4 months). Rosie doesn’t have any permanent hearing loss, thankfully. However, she has teeny tiny ear canals, so has moderate deafness caused by glue ear.
Children with Down Syndrome will receive regular eye tests throughout their lives, as they are likely to suffer from poor vision. Rosie, so far, at 1 year old is doing well with long-sight within normal parameters for her age, and a squint that seems to have self-resolved.
Your child will probably receive eye tests between 10 months and 2 years, and regularly from there on. Rosie had her first about about 8 months old, and will have them 4 monthly for a while. This service is almost always provided through your hospital, but you can take your child’s prescription to any opticians. The DSA have provided a useful factsheet around their ‘Big and BOLD’ campaign.
Early Years Support Service
The Early Years Support Service (known locally as iSEND) provide specialist support for children with Down Syndrome in their education setting. In particular, they will work with parents to develop an EHCP. This is one service that varies considerably depending on location.