*The following blog post is written by Joelle, a mum of three children. Joelle’s youngest baby Josee has Down syndrome and although she knew she wanted to breastfeed her, she was aware of the unique challenges that she would face. Through seeking support and her own motivation to breastfeed, she is still breastfeeding Josee today at 20 months old. This is her story and her tips for breastfeeding a baby with Down syndrome.
‘I rang my husband in tears “They think the baby might have Down syndrome, I’m sorry, I’m so sorry”… I repeated my apologies over and over. He made his way back to the clinic and told me to stop apologizing. My friend, who was minding my children, brought them back to me and through tears I broke them the news that their sibling may have Down syndrome’
When I received the news 13 weeks into my pregnancy that my third child would be born with Down syndrome one of the first concerns I had was whether she would be able to breastfeed. I was in utter shock, events like these only happen to other people, not us!
We were told at the time of diagnosis that our baby girl was in heart failure due to a condition called hydrops, an accumulation of fluid in several body regions. The medical staff predicted she would pass away early on in my pregnancy, however she went on to defy all odds and was born without any medical complications, despite her diagnosis. Being told our child would pass away put her diagnosis of Down syndrome in perspective. I still had a lot of fear and anxiety but the feelings of initial devastation that I had left and I loved my daughter already with a fierce heart! I really had no idea about Down syndrome, despite being an early childhood teacher, and took it upon myself to learn as much as I could before she was born. If you would like to read the whole diagnosis story click here.
As my pregnancy went on and we became more hopeful for her safe arrival, my thoughts started to shift towards everything that could happen after she was born. I worried that she wouldn’t be able to breastfeed at all and was scared that perhaps this could affect me bonding with her. The thought of other people being able to feed her (via a nasal gastric tube or bottle) made me feel uneasy, it was always my responsibility to feed my babies and I didn’t like the thought of handing this over to anybody!
Having a prenatal diagnosis gave me time to research, speak with lactation consultants and try to find other mothers who had successfully breastfed their babies with Down syndrome. I was amazed at the amount of negative stories I was told. The ‘blanket’ approach (one size fits all) that gets thrown over our children with additional needs appeared to be thrown over breastfeeding too, with many in the medical field preparing me that it was not going to happen. I became determined to be able to breastfeed her, and if not possible, then to express (pump) my breast milk and feed it to her via a bottle.
When I was 34 weeks pregnant I visited our local hospital where our little girl would be born. We were told babies with Down syndrome were often premature and can be small due to inter uterine growth restrictions or placental failure. The midwives showed me the special care nursery where it was assumed that she would spend her first few days, or weeks, of life. There they gave me small containers to collect colostrum in and suggested I start expressing at home from 37 weeks. Physically and mentally I struggled to do this, holding a container in one hand and trying to extract teeny amounts of colostrum with my other hand started to make everything seem more ‘real’ to me. I was terrified of bringing my baby out into the world. Whilst she was inside of me I felt that she was safe. I never managed to get any milk, I was so disheartened to go into hospital without something to give the baby, but it also made me more determined than ever to try and breastfeed my daughter once she was born.
Fast forward to 41 weeks and 3 days pregnant, at 8:30pm we welcomed Josee Hope into the world! Weighing in at a healthy 3950g (8lb11oz) and with Apgar scores of 9, this girl was already proving everyone wrong!
‘My first cuddle with Josee Hope was the most magical moment of my life. I was so utterly amazed that she had made it into the world and she was just beautiful and big! She nuzzled at my breast without feeding as the paediatrician wanted to check her digestive tract before she fed. We were given a short amount of time together where we just cuddled her and had skin-to-skin contact. I was, and still am, so thankful that the hospital staff allowed this.
Josee Hope spent two days in Special Care for observation and to monitor breastfeeding. She came home five days after birth and was initially slow to gain weight, due to her low tone. She required top up feeds of pumped breast milk via a bottle after breastfeeds for the first few months. Josee Hope continues to grow beautifully and has no medical issues. Today she is a gorgeous, social and lovable baby with a smile that melts your heart. She is a true miracle and a blessing to our lives’. (extract from ‘Unexpected’)
I now want to share with you some of the trials and tribulations we encountered as we learnt the breastfeeding ‘dance’; I always like to think of breastfeeding in this way! It really is like two people learning a new dance together; it takes lots of practice and patience
From my experience (and now after speaking with many other Mums of babies with Down syndrome) there can be many challenges that you may face breastfeeding a baby with Down syndrome. Fortunately for us Josee did not have any medical issues and was never tube fed or on oxygen. These factors can have a huge impact on how, or even if, a baby with Down syndrome can breastfeed. Unfortunately many medical staff do not have the knowledge or experience to support women who would like to breastfed their child with Down syndrome but are having issues, and parents can be left to navigate through this difficult time alone.
10 tips for Breastfeeding a baby with Trisomy 21 (Down syndrome)
Note: these tips may not apply to all children born with Down syndrome and should not replace medical advice. This information is what the author personally found useful in her experience of breastfeeding a baby who has Down syndrome.
1. Find a lactation consultant who can guide you through your breastfeeding journey, be present at those times when you need support, and can advocate for breastfeeding and breast milk on your behalf when you don’t feel like you can. There are options such as donor milk and milk banks set up for instances when a mother cannot breastfeed. I personally know of a Mum who has sourced donor breast milk for her daughter who has Down syndrome for over a year in her local area!
2. Reach out to a Down syndrome support group, it could be a local group, association or an online forum, it will be comforting to meet people who have walked your path. The support and advice for unique situations that can arise from having a baby with Down syndrome is invaluable. Some of my ‘closest’ friends are those within the Down syndrome community as far away as America, seriously! Location doesn’t matter when you need someone that understands.
3. Understand that there ‘could’ be factors that may impact on your ability to breastfeed your baby, however these are different for every baby and mother. Having a prenatal diagnosis meant I had the time to read up on all the things that may impact; medical complications such as heart defects to jaundice, intestinal issues to missing reflexes. It was good to understand there were factors but it is important to know each baby with Down syndrome is different, just as babies with typical chromosomes are all different too! I have to say however the one commonality I seem to come across is that newborns with Down syndrome are generally extremely sleepy in those initial weeks which can affect their ability to breastfeed well. This sleepiness is often linked to low muscle tone, which means newborns with Down syndrome often have to work harder than a typical baby to get the same amount of breast milk. The result can be slow weight gain and sometimes a poor milk supply, as milk is not drained efficiently from the mother. For Josee it was her hypotonia (extremely low muscle tone) that had the biggest impact as she struggled to gain weight however over time she grew stronger and became an efficient breastfeeder.
4. Where possible allow skin to skin contact at birth and if at all possible allow the baby to mouth at the breast. I am forever thankful to the medical team present at Josee’s birth for allowing skin-to-skin contact once she was born. I have no idea how long they let me cuddle her for, but that moment will forever be etched in my mind, it was very special. I believe it had a huge impact on her ability to breastfeed from the word go and for us to bond immediately. Anytime afterwards I have found skin-to- skin contact a great way to boost supply and cement our breastfeeding relationship. Obviously if your child is whisked away at birth for a medical purpose know that skin-to-skin contact is beneficial for your baby at anytime! (And it has the added bonus of having a soothing effect on mothers too!).
5. Have a breast pump ready to go and be prepared to pump! As mentioned earlier newborns with Down syndrome can be sleepy and you may need some help via a breast pump to help establish your supply. Personally, I simply don’t respond well to an electric pump so I used a manual hand pump to express for top up feeds and to help establish my supply. I have read amazing stories of women who have pumped for many months only to have their baby with Down syndrome start attaching to the breast at a later date – some even as late as 9 months, isn’t that incredible?! Along with the pump you may need a ‘Medela special needs feeder’ (previously known as a ‘Habermann feeder’) to feed your baby if they are tiring easily. These bottles are especially made for babies with additional needs and actually help to teach them to suck with their unique teat that can be squeezed as the baby feeds. We comp fed Josee with top up expressed breast milk (EBM) after each breastfeed via the special needs feeder, syringe or cup feeding for many months to help her to gain weight. Josee was born with several reflexes missing, thankfully her suck reflex wasn’t one of them, however it wasn’t overly strong and it did take longer than usual for my milk to come in.
6. Use a firm cushion to breastfeed your baby – As mentioned previously babies with Down syndrome often have low muscle tone, which can make them feel ‘floppy’ to hold. This can pose problems when trying to breastfeed as they can have trouble supporting their own body weight and usually lack any neck strength and head control. I used the ‘Tetra feeding pillow’ with fantastic results, you could however go to a foam shop and have a feeding pillow custom made. This pillow is extremely firm which helped me immensely as it provided a stable surface to support Josee’s body. Without it I found it really difficult to gather her up in my arms and I would find her slipping into positions which were not great for her little body to breastfeed in and she would then tire easily.
7. Stimulate your baby before breastfeeding – this point relates to that sleepy baby again that you may find yourself with. My husband and I were quite proud of our little sleeping baby, until the paediatrician said she was too sleepy and needed to be stimulated to wake up before each breastfeed! This process would sometimes take as long as the breastfeed with Josee; everything from undressing her to just changing her nappy, using a wet face washer on her face and limbs, holding her upright and talking to her, to switching sides and changing positions when she was actually breastfeeding. This was really difficult in those first few weeks, but improved greatly within a few months. Ironically now she always fights going to sleep…perhaps we created a sleep monster!
8. Support your breast tissue near the baby’s chin – otherwise known as the ‘Dancer hold’. As stated earlier babies with Down syndrome generally have low muscle tone and tire easily when breastfeeding. By cupping under the breast and taking the pressure off the baby’s chin you can aid in their efficiency and longevity to suck. The ‘football’ hold can also help too in instances when your baby tires easily. Speak with your lactation consultant to see if you can find a position that suits you both. Be aware that the suck-swallow-breathe cycle can take a little longer for babies with Down syndrome to learn. If you are one of those mothers blessed with an oversupply a reclined position may suit you best to breastfeed your baby, which leads me to my next point….
9. Boost your supply if needed with frequent feeds, fenugreek, blessed thistle and/or brewers yeast (in shakes or cookies). Be prepared that you may need to take medication such as Domperidone, even if it is just in the initial stages. I used to swap sides at least twice through a feed, which also helped to keep her awake and helped to boost my supply. I am forever envious of the mother with an oversupply, I have always had to feed frequently with each of my children!
10. And lastly….Enjoy your baby! This is only a season in the long story of life. Although it can be difficult, feel challenging and seem overwhelming, this season will pass. I often joke that I never want to look at another breast pump ever again, but you know, if I had to do it all over again for another child I would! Our little babies with Down syndrome are often underestimated right from the word go, be prepared for your child to surprise you and those around you with their determination and fighting spirit. Just because they have a diagnosis it does not have to define them or their capabilities!
End note:
Josee Hope is still breastfed at 20 months of age and I am so thankful to have been able to breastfeed her, it truly feels like a gift. Although in many ways having a prenatal diagnosis allowed me the opportunity to do a lot of research about Down syndrome and process her diagnosis, it also meant I had a lot of time to worry. If I knew then what I know now I shouldn’t have worried at all, she is a delight and such an awesome little girl, perfect in our eyes! My favourite saying is ‘No prenatal diagnosis can predict this kind of happiness!’. I hope these tips are helpful to you and your child with Down syndrome too!
-Joelle
Josee’s Facebook page: https://www.facebook.com/
Down syndrome Diagnosis Network (DSDN): http://www.dsdiagnosisnetwork.org/
Down syndrome Australia: http://www.downsyndrome.org.au/index.html
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