Information for Parents

New Parents

Congratulations on the birth of you baby boy or girl! Being a New Parent is hard and of course every parent is often overwhelmed or concerned. Give yourself time to adjust to your new miracle and the challenges being a parent may bring. Spend time with your child and get to know their own individual personality. If your baby is healthy you don’t need to worry about the rest now (5). Relax and Enjoy your new life with your baby!

Some mothers may wish to breastfeed their baby, and while breast feeding is easier for some people than others it may just take a little more time and patience for babies with Down’s Syndrome. Many people are often informed that their baby may never breastfeed but with some perseverance they have been successful. Babies may find breastfeeding easier as they grow slightly older (4).

Breastfeeding is the most beneficial method of feeding your new born baby. It provides immunity, essential nutrients, and is the most natural process on earth. The benefits of breast milk are even greater in Down Syndrome babies (7).

Reasons to Breastfeed

Down Syndrome babies are more prone to infections and bowel problems, especially in the first few days of life, which breast milk protects against, providing lots of anti-bodies especially from the ‘First milk’ or the Colostrum. As well as this, through breast feeding, the baby strengthens their mouth and tongue muscles, providing them with a huge advantage in developing their eating and chewing mechanisms for later life. As this is a problem associated with Down Syndrome, extra patience in the mother is needed while breastfeeding, due to the weak suck- With time this will become stronger (7).

In Down syndrome patients/individuals, it may be slightly more difficult for them to form relationships between people, even loved ones such as their parents, siblings or other family members. Breastfeeding aids the formation of the essential bond between mother and baby, so that the relationship can only become stronger with age (7).

Tips while breastfeeding

  • Your baby may become tired quite easily, so ensure they are fully awake before starting, and continue touch sensations throughout to keep them alert.
  • If the baby tends to gulp/choke, try ensure the neck and shoulders are higher than the nipple.
  • If the baby is having difficulty latching on, support its chin and jaw, while nursing using the ‘Dancer Hold’ (as shown in the photo)
  • Use extra support for positioning such as a pillow/mat. (7)

Dancer hold

Dancer hold – Breastfeeding Basics (2017) (1)

Since people with Down’s Syndrome often have reduced Immunity it is important you keep up with your babies Vaccinations.  Vaccinations do not cause any proven side effects. It is important your child has all their childhood vaccinations (11). Children with Down’s Syndrome may also be offered additional vaccinations such as the Flu Jab to prevent risk of complications such as pneumonia (7).

Exercise Plans

Exercise is a great way to burn calories, release positive endorphins, boosting mood and can become a fantastic social activity. Maintaining a healthy weight through diet and exercise, will help improve self-esteem, positive body image and reducing depression (1).

During childhood and adolescence building a good physical activity regime can increase likelihood of regular exercise being continued into adulthood. This can be difficult as studies show that regular exercise though childhood and adolescence declines. During adulthood is important to encourage exercise as many individuals with Down Syndrome may become used to living a sedentary lifestyle and changing this lifestyle can be difficult (14). The is also some evidence that females are more likely to be inactive than males (6).

Just like every member of the general population, Down syndrome patients can suffer from diabetes and obesity as well as other atypical conditions. These conditions should be kept in mind when exercising as they could cause injury.

These conditions are: (8)

Hyper mobility – joints and ligaments could over stretch beyond what they should.

Hypotonicity – Down Syndrome patients how low muscle mass, those muscle however are more likely to stretch beyond what is physically recommended. This can increase their instability of their muso-skeletal system.

Heart Defects – Often surgery is performed on Down Syndrome babies while only few days old. As these surgeries are usually very successful, generally there is no heart problems effecting day to day life. However, during physical exercise Down syndrome patients have a weakened cardiorespiratory capacity.

Light exercise including walks and swimming are fantastic group activities, great ways of socializing with friends or family.

Due to the above reasons, GPs advice should be sought before commencing heavy or intensive exercise.

Programmes and checks that will benefit you and your child.

Good programmes and checks for down’s syndrome patients include:

  • Speech and language therapy. This will help patients develop their language, communication and speech skills. This will hopefully lead to confidence in this area of skills for each patient. (10)
  • Physiotherapy will help any muscle weakness and movement problems patients may have (10). Early Paediatric physiotherapy helps children develop motor skills and confidence (13).
  • Some parents feel it is important to take time off work to help their child. In this case there is funding that can be made available to families that are struggling financially.
  • Down’s Syndrome patients can have many complications within their life, It is always good to have regular check-ups by your local GP to help maintain any symptoms and see the development and progression of any complications. A regular 6-12-month check-up would ensure that patients and parents wellbeing is sufficient.

Financial Help

UK government offers different types of financial help for all the stages of a child life.

As soon as the child is born, parents can apply in the UK benefits system for Child Benefit, Child Tax Credit and Disability Living Alliance (DLA). If needed, there are also benefits for the carer of the child.

Once the child becomes an adult and is able to work he can apply for the Personal Independence Payment (PIP) or, if not able to work, he can acquire the Employment and Support Allowance (ESA). Once he will go to live independently he’ll may ask for Housing Benefit, Universal Credit and other financial supports. (2)

Education

Children with Down’s Syndrome are different in relation to educational needs. They can go in local mainstream schools and, if needed, they can obtain the help of a social care assistant. Or they can apply for a special school.

The choice is given to the parents that, together with an educational psychologist and a language therapist can evaluate the personal needs of the child. (3)

Support

There are many support groups both local and nationwide for the family, parents and individuals with Downs Syndrome. More information on support groups can be found here

References:

  1. Breastfeeding Basics (2017). Dancer Hold. [image] Available at: https://www.breastfeedingbasics.com/wp-content/uploads/2014/07/BFB-Dancer-Hold-150×150.jpg [Accessed 13 Dec. 2017]
  2. Downs-syndrome.org.uk. (2017). Benefits and Financial Help | Down’s Syndrome Association. [online] Available at: https://www.downs-syndrome.org.uk/for-families-and-carers/benefits-and-financial-help/ [Accessed 8 Dec. 2017].
  3. Downs-syndrome.org.uk. (2017). Education | Down’s Syndrome Association. [online] Available at: https://www.downs-syndrome.org.uk/for-families-and-carers/education/ [Accessed 8 Dec. 2017].
  4. Downs-syndrome.org.uk. (2017). For New Parents | Down’s Syndrome Association. [online] Available at: https://www.downs-syndrome.org.uk/for-new-parents/ [Accessed 13 Dec. 2017].
  5. Downs-syndrome.org.uk. (2017). Feeding | Down’s Syndrome Association. [online] Available at: https://www.downs-syndrome.org.uk/for-families-and-carers/growing-up/feeding-2/ [Accessed 13 Dec. 2017].
  6. Intellectualdisability.info. (2017). The benefits of exercise to a Down’s Syndrome population. [online] Available at: http://www.intellectualdisability.info/physical-health/articles/the-benefits-of-exercise-to-a-downs-syndrome-population [Accessed 13 Dec. 2017].
  7. Llli.org. (2017). LLLI | Breastfeeding a Baby with Down Syndrome. [online] Available at: http://www.llli.org/faq/down.html [Accessed 13 Dec. 2017]
  8. Mardra Sikora. (2017). Exercise Plan – Part of being a Healthy Adult with Down Syndrome – Mardra Sikora. [online] Available at: https://mardrasikora.com/exercise-plan-part-of-being-a-healthy-adult-with-down-syndrome/ [Accessed 13 Dec. 2017].
  9. nhs.uk. (2017). Flu vaccine for adults – Vaccinations – NHS Choices. [online] Available at: https://www.nhs.uk/Conditions/vaccinations/Pages/flu-influenza-vaccine.aspx [Accessed 13 Dec. 2017].
  10. nhs.uk. (2017). Living with. [online] Available at: https://www.nhs.uk/conditions/downs-syndrome/living-with/ [Accessed 13 Dec. 2017].
  11. nhs.uk. (2017). Vaccination schedule – Vaccinations – NHS Choices. [online] Available at: https://www.nhs.uk/Conditions/vaccinations/Pages/vaccination-schedule-age-checklist.aspx [Accessed 13 Dec. 2017].
  12. Pitetti, K., Baynard, T. and Agiovlasitis, S. (2013). Children and adolescents with Down syndrome, physical fitness and physical activity. Journal of Sport and Health Science, 2(1), pp.47-57.
  13. Therapiesforkids.com.au. (2017). Down Syndrome – Physiotherapy for | Therapies For Kids. [online] Available at: http://www.therapiesforkids.com.au/conditions/down-syndrome/ [Accessed 12 Dec. 2017].
  14. Waters, K.T., 2017. Learning to be Fit: Social change for individuals with cognitive differences through organized team based sports