You have just had a new baby and that is something to celebrate! Your newborn needs to be loved like any baby does. After finding out your new baby has Down syndrome, you may be feeling many emotions at once. This is normal. There is no right or wrong way to feel. Receiving the news can be shocking. It may take time to adjust to having a child with Down syndrome. This is okay. Your journey will be unique to you. All parents have different feelings when they find out they have a child with Down syndrome. Some parents feel happy and excited about the birth of their baby, while some experience feelings of shock, sadness, guilt, or disappointment. Many feel a lot of uncertainty and doubt regarding their child’s future. You should know that there is absolutely nothing that you did to cause your child to have Down syndrome.

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After learning your baby has Down syndrome, one of the hardest things can be telling your friends and family. You may still be adjusting. You may be worried about how others are going to react to the news. It is normal to feel nervous about telling your friends and family. You might get mixed responses from them. Many will be in shock and will grieve the same way you did. Tell them that this new baby is something to be excited about and to celebrate. It is important to remind your friends and family about the joy of having a new child.

It can be difficult to know what to say or do when you learn that someone you know is expecting or just recently had a baby with Down syndrome. We asked Canadians with Down syndrome what they think people should say to new parents…

Find more information on sharing the news in 21 Welcomes.

The early days of feeding are a time for you and your baby to get to know each other and create a special bond. You must make some adjustments during this time because every baby is unique. As you get acquainted, you will discover that babies with Down syndrome have physical characteristics that may have an impact on feeding. You probably will not encounter every challenge, but understanding your baby’s particular needs will help you to get feeding off to a good start.

Contrary to misconception, babies with Down syndrome can and do breastfeed. Keep in mind, no matter the feeding method you choose, it often takes time and patience to make sure your baby is feeding well. In the early days, you may need information, support, and/or practical interventions from a feeding specialist. The most important thing is that you find a way that works best for you and your baby. For some mothers, breastfeeding simply doesn’t work out – and that’s okay. Your healthcare provider or doctor can provide information on all feeding options.

Find more details about feeding your baby in 21 Weclomes

POSITIONING

When breastfeeding, many mothers find the laid-back position helpful in getting a deep latch with no nipple pain. This position is especially helpful in the early days or weeks after the birth. To use this position:

• Place your baby on your bare chest.
• Use pillows to support yourself as you lean back at about a 45-degree angle.
• Your body supports your baby; the prone position helps babies open their mouths wide.

Positioning your baby in a comfortable and supportive arrangement will preserve their energy and allow them to use this energy for feeding.

LATCHING ON 

Express some milk onto your nipple prior to breastfeeding. This may encourage your baby to latch on. Also ensure your baby gets a large mouthful of breast tissue. This will help your baby draw the milk out and stimulate the breasts to produce more. 

SIGNS OF MILK TRANSFER

If your baby is latched on deeply and sucking steadily, they will drink lots of milk. The following signs help you know your baby is drinking well.

• Your baby is sucking with a steady rhythm and few pauses.
• You can hear swallowing.
• You are not experiencing nipple pain.
• Your breast feels softer after your baby feeds.
• Your baby has 6-8 wet diapers and 2-5 stools every 24 hours.
• Your baby is gaining weight.

BREAST COMPRESSION AND SWITCH NURSING

Breast compression is done when your baby is breastfeeding but sleepy or not actively sucking. Use one hand to squeeze the breast firmly but not so hard that it hurts. Your baby should start to swallow. Keep squeezing until your baby stops or slows down their sucking again. When you release the pressure, your baby will increase swallowing; once it slows down, squeeze again. Repeat the squeezing and releasing until it no longer works, and then offer your baby the other breast. 

To try switch nursing, watch for your baby to lose interest in active suckling, then slip a finger in the corner of their mouth to break the suction and offer the other breast; your baby should nurse more vigorously. When their sucking slows again, switch him back. Keep repeating this until they seem satisfied. You can combine breast compression and switch nursing or do just one or the other. You will see what works best for your baby. 

If there are challenges, you may need information, support, and/or practical interventions to reach your goal. IBCLCs (International Board Certified Lactation Consultants) can assist with latching and milk supply issues. You can also find support through La Leche League, a mother-to-mother support group of volunteers that provide breastfeeding support online, over the phone, and in person.

Visit the La Leche League Website

Early intervention programs are available for children from birth through to about five years old. Through these programs, early childhood specialists provide families with support and ideas for activities that will be beneficial to their child’s development. It is important to start early intervention programs as soon as possible, especially for children with Down syndrome.

Common early intervention programs for children with Down syndrome are physical therapy (PT), speech-language pathology (SLP), and occupational therapy (OT). During early interventions, professionals will observe your child’s gross and fine motor abilities, language skills, social development, and self-help skills, and will then develop focused activities specific to your child. This will allow for your child’s individual skills to be developed and strengthened.

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After giving birth to a baby with Down syndrome, many parents are worried about how it will affect their other children. This is understandable. The good news is that a study done by Dr. Skotko and his colleagues found that an overwhelming majority of parents feel that their children with Down syndrome have a good relationship with their siblings. They also found that 94% of older siblings to a child with Down syndrome are proud of their brother or sister.

The vast majority of people describe their relationship with their sibling with Down syndrome as positive and enriching; some even say their sibling is the best thing that ever happened to them. It is important to keep in mind that your children will have their own unique journey, full of the typical friction, learning, and love that embodies sibling relationships.

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Having a child with Down syndrome will affect everyone in your family: parents, siblings, grandparents, and extended family. Everyone processes information differently; allow time for every family member to adjust. By supporting family members in learning and understanding Down syndrome, you will help them learn about your new family member and all the possibilities that the future holds for them. Together you and your family can support each other, and a great place to start is sharing this booklet with them so they can learn with you.

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