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Nursing A Baby With Down Syndrome Can Be Different, But 'Still Beautiful'

This mom wants you to know there are ways to make it work.
Ajax, Ont. mom Karen MacDonald and her son, Joshua.
Karen MacDonald
Ajax, Ont. mom Karen MacDonald and her son, Joshua.

It was so important for Karen MacDonald to be able to breastfeed her new baby.

She wanted her son to get the best start in life, strongly felt that breast was best, and yearned for the bonding experience. But once she gave birth, Joshua — like a lot of babies with Down syndrome — had trouble latching on due to low muscle tone. With the support of nurses at the Mississauga, Ont. hospital where Joshua was born, MacDonald tried to breastfeed for a week before she had to admit it wasn't working.

"We tried ... He wanted to have his milk, but he wouldn't latch. Even if he did latch, he didn't stay latched," MacDonald told HuffPost Canada in a phone interview from Ajax, Ont. where she and Joshua, 21, now live.

"I could have kept trying, but I was very quick to find an alternative solution. You're a new mom, you're overwhelmed, and you're exhausted, and I just wanted to make it work."

There are specific challenges to breastfeeding babies with Down syndrome

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When a baby has Down syndrome, breastfeeding can come with some extra challenges, Teresa Pitman, who has been a leader at La Leche League Canada for more than 40 years (and is the former executive director of the organization), told HuffPost Canada via email.

Low muscle tone can make it harder to position the baby at the breast and get a good latch, Pitman said, and can also cause the baby to tire easily and be less effective at obtaining the milk. A lot of babies with Down syndrome also have heart defects that can cause them to tire quickly, she added. Some have other medical issues that can require special care, making it harder to keep the mother and baby together, Pitman said.

Between medical issues and parents who are dealing with a lot of new information at once, breastfeeding doesn't always get off to a good start, Pitman said.

"They might have been surprised by the baby's diagnosis, and focused more on that than breastfeeding, or the baby had some of the additional health concerns that Down syndrome babies have and so they were dealing with a lot of medical issues," Pitman said.

"I usually hear from parents once everyone is home and adjusting to the situation, and they remember that they wanted to breastfeed and wonder if there is still a way to make it work."

There are alternative solutions

Karen MacDonald and her son, Joshua, not long after he was born.
Karen MacDonald
Karen MacDonald and her son, Joshua, not long after he was born.

For MacDonald, a combination of frustration (on both her and Joshua's part) over latching, worry about Joshua's milk intake, and what she describes as her practical nature had her looking for other solutions fast. And for her, that solution was pumping.

"I wanted to be close to my baby and I wanted to give my baby the best," MacDonald recalled.

"But I'm also pretty practical, so I realized maybe there's still a way to give my baby the best, but through a different method."

MacDonald rented a double pump, and fed Joshua breast milk through bottles until he was three months old, she said. At that point the toll of pumping every few hours, feeding the baby, cleaning the equipment, and starting over had left her exhausted and sore, so she stopped. But MacDonald is happy she was able to give Joshua her breast milk for as long as she was able.

"He was still getting my breast milk. It just wasn't the experience I was hoping for," she said.

These tips can help breastfeeding moms

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It does get easier over time, Pitman said.

In those important first few weeks after a baby is born, hand expressing is a good way to keep your milk production up if your baby isn't feeding well or is separated from you for medical issues, Pitman said. Once your supply has increased, you can switch to pumping, she added.

"The milk you express or pump can be fed to the baby, even if it has to be in a bottle at that stage," she said.

Extra pillows can help you support your baby (and your arms) while you try to find breastfeeding positions that work best, Pitman added. And, if you can get your baby to latch, supplementing at the breast with a feeding tube (of your own expressed milk) can help your baby get the food he or she needs without getting too tired, she said.

"Many parents are told that Down syndrome babies can't breastfeed or that it's too difficult and not worth the effort. But the parents who have done it will tell you that's not true," Pitman said.

"Make it work for you"

Today, Joshua MacDonald (right) is 21. His mother Karen (left) says he's "strong as an ox."
Karen MacDonald
Today, Joshua MacDonald (right) is 21. His mother Karen (left) says he's "strong as an ox."

MacDonald says she has no regrets over how her breastfeeding journey with Joshua worked out.

"It was still beautiful," she said.

Today, Joshua is 21 and "strong as an ox," she said with a laugh.

Joshua MacDonald
Karen MacDonald
Joshua MacDonald

MacDonald wants other mothers of babies with Down syndrome to know not to give up if they want to breastfeed, even if they have to change their plans for how that will look. If you can't do it naturally, find an alternative way to make it work, she said.

"You have to find your own way. Do what's best for you and your baby," she said.

"Don't let the equipment throw you off."

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