Guest Blog by Anita Kolaczynska
Our youngest daughter, Magdalena, is ten and just had a party with twenty of her friends. She breastfed into her fifth year, when she self-weaned. She enjoys karate, Brownies, horse-riding and swimming. She likes to eat pitta bread and humous while watching T.V. She doesn’t like babies or being rushed. Her happiest place is outside, helping out with our goats and hens. She is fascinated by the natural world; delighting in recounting extraordinary animal facts. Her and her big sisters get up to the usual sibling fun and mischief and Magdalena stars in an annual documentary series that one of them makes about their life together. The award winning films are called ‘My Little Sister (who happens to have Down’s syndrome)’
When someone you are supporting to breastfeed has a diagnosis of their baby having Down’s syndrome, the mind is likely to conjure up a different image to the person that I’ve described above. Most people are unlikely to imagine an individual with her own interests and character, who feels the whole range and depth of human emotions and who is fully included in family life and her community. In truth, just as no two people are alike, no two people with Down’s syndrome are alike, so why we should build any picture at all is crazy-but we do. So, cancel those pictures and projections of what you think you know and instead see the baby you have in front of you and focus on what her needs are now this minute, this hour, this day.
When a baby is diagnosed with Down’s syndrome, the baby is often talked about as a collection of potential medical issues. A plethora of professionals are involved using medical jargon, often giving conflicting information as they test, diagnose, examine, fill out paperwork – the overload of information and aura of anxiety about an uncertain future, can leave the parents feeling left without a voice and disturbed that their baby is not being treated as an individual. Within this vulnerable context many mums get told ‘Downs babies don’t breastfeed’
Putting aside for a minute that this statement isn’t true, look at what else the mum is hearing here.
- Her baby is being defined, therefore limited, by having an extra chromosome.
- Her baby is already being talked about in terms of what she can’t do.
This is why “person first” language is important. Please say: ‘a baby with Down’s syndrome’ This way the individual comes first, the condition does not define the person. Read the guidelines on what to say/not say and educate people where you can:
Babies with D.S. do breastfeed successfully. Those who experience difficulties may take longer getting breastfeeding established but with the right support can go on to have the breastfeeding relationship they want.
Mythbust-If the baby is having difficulty feeding from the breast then the bottle will be easier.
Not true, the baby is likely to tire just as easily and find the co-ordination skills needed to feed just as difficult, the same patience and persistence will be needed, whether feeding with breast or bottle.
The benefits of breastfeeding dramatically increase for a baby with D.S. Conditions that are more common, such as lowered immunity, respiratory infections, constipation, low muscle tone, all improve with breastmilk and of course breastfeeding aids in the development and co-ordination of oral muscles as a pre-cursor to speech.
Babies with Down’s syndrome are commonly slower to gain the initial weight lost after birth. Many professionals are not using the growth charts specific to D.S. The weight loss and different feeding needs to a typical baby can trigger fear and panic and escalate to hospitalisation/drip/formula, ending the breastfeeding relationship and leaving the mother robbed of her choices and doubting her instincts.
This is why the support of a breastfeeding counsellor is so valuable. You may be the only person who, through responsible monitoring of all the signs of thriving, has the courage with the mother to wait. By supplying the mother with accurate information and supporting the mother to stay close to her baby at all times, and learn how to recognise and respond to her baby’s cues you are also empowering her to take ownership of her baby back and upholding her ability to nurture and mother.
-Make sure the right growth charts are being used. You can download charts here:
Growth charts specific to babies with D.S.
A trained breastfeeding counsellor will assess each mum and baby as individuals and suggest ways to address specific issues. Don’t compare her baby with other typically developing babies or other babies with D.S. Compare this baby with itself, notice progress and celebrate each small step.
Common issues when a baby with D.S. is having difficulty breastfeeding:
Mainly these arise through a heart problem and or hypotonia (low muscle tone)
Heart problems get fixed with surgery and hypotonia improves as the baby develops.
The issues that present can be all or any of the following:
Sleepy babies-extreme tiredness/lack of energy/falls asleep after a few sucks
This means waking your baby up to feed every few hours throughout the day and night. Feeding little and often, lots of little breaks within a feed to keep baby awake and allow milk to digest. Maximising signs of readiness to feed, don’t wait when you see lips/eyelids move slightly. Stimulating baby to keep feeding through massaging/blowing/taking off clothes, wake up if falling asleep after a few sucks by changing nappy, putting back to the breast…
Poor latch, difficulty maintaining latch
Experiment with supportive positions to support baby and breast, Practical breastfeeding support-use supportive positions like dancer hold, breast compression, support breast and baby’s jaw at the same time to maintain seal.
Expressing/SNS/using a syringe can be useful if baby is not feeding long enough to get sufficient hindmilk.
Massaging whilst feeding, blowing on baby’s cheek, cool flannels to keep baby stimulated and awake.
Express some milk first, if flow too strong for baby.
If baby is arching, floppy, difficult to support-try swaddling.
Smaller passageways can block easily. Keep baby’s ears above their mouth. Semi-upright positions are often better to feed in.
Can use steam infuser to clear congestion.
Massage to aid digestion.
Lots of skin to skin.
This all takes an enormous time commitment before baby gets stronger, is less vulnerable and breastfeeding happens with ease. So, lower time expectations, acknowledge everything will take longer, patience and persistence will be needed but breastfeeding will get easier. Think of 3-6 months rather than 6 weeks. For mum to be able to commit to the intensity and length of feeding her baby, good support networks are so helpful. For instance, help with other children, meals, housework need to be put in place if possible. There are organisations like ‘homestart’ to help if family and friends aren’t around.
So I’ve been called in to help, what do I do?
Congratulate the parents on the birth of their beautiful baby, pick her up, cuddle her, look into her eyes, notice that she looks like mum/dad/big sister…smile and be joyful that you have the privilege of meeting this new life and have a valued role in supporting this mum and her baby.
-Go to the D.S.A. website http://www.downs-syndrome.org.uk/about-downs-syndrome/truth-and-fiction/
Familiarise yourself with the myths and outdated language, choose to evolve the future by not perpetuating the stereotypes of the past where our babies with D.S. were institutionalised and deemed uneducable. There are leaflets for new parents and a free helpline. Make sure your mum knows about these.
-Don’t assume you know more than the mum or how she is feeling; empower her to get to know her baby by watching for cues of readiness to feed.
-Acknowledge her commitment, time, patience and the value of what she is choosing to do ‘I am here to support your choices’
Watch and share these films to educate and change perceptions about Down’s syndrome
My Little Sister (who happens to have Down’s syndrome)
Positive uplifting documentary series about real life with a sibling with D.S.
Anita Kolaczynska’s little book and ebook ‘Magdalena’s milk-Breastfeeding and Down’s syndrome’ is to be published later this year. Anita is available for consultations, runs workshops and gives presentations about Down’s syndrome and breastfeeding. You can contact her at: