Recently, an amazing mum in our community requested that I put up a post on Down Syndrome as October is Down Syndrome Awareness month. At first I thought to myself, I’m only good at writing stuff I know a lot about. I have no idea how to write an article on a topic I have never experienced. I also recognized that this topic was very sensitive and I didn’t want to risk saying the wrong things. Just as I was discarding the idea, I remembered why I started ‘Breastfeeding NG’, to help support mums and so I challenged myself to write this article after extensive research. So here goes: Let’s talk about Breastfeeding and Down Syndrome!
Down Syndrome (not Down’s syndrome) is a genetic disorder that happens during pregnancy. It is also known as trisomy 21. All humans are made up of cells that make up their being. These cells contain tiny thread like structures called chromosomes. These chromosomes contain genetic material which make up who and what you are. Most humans have 46 chromosomes; 23 from Mama and 23 from Dada. Babies with down syndrome have 47. Now this extra genetic makeup can cause them to express some of their features differently. Currently, we don’t know what causes this extra chromosome to form. There seems to be a link between advanced maternal age and the incidence of down syndrome. Women aged 35 and older have a higher chance of having babies with down syndrome. You’re also more likely to have a child with down syndrome if you’ve had one already.
During pregnancy, your ultrasound may be able to detect if your baby has down syndrome. This often gives families time to adjust and prepare towards the arrival of their baby. Some of the symptoms include:
- Eyes that slant upward or are almond shaped
- Small ears that may fold over slightly at the top
- Small mouth that makes the tongue appear large
- Small nose with a flattened bridge
- Short neck
- Small hands with short fingers
- Loose joints
Babies with down syndrome may also have:
- Higher risk of infections
- Heart defects
- Vision and hearing impairment
- Intestinal problems
Thanks to modern medicine and societal awareness, the quality of life of babies with down syndrome has improved greatly. Most of them live long, happy and full lives and are valued members of the society. Babies who present with medical challenges can have most of them managed or even corrected. Babies with down syndrome are special and deserve as much attention, care and love as all other children.
Breastfeeding A Baby With Down Syndrome
Quite often, parents may be told that breastfeeding may not be possible due to a couple of reasons including: prematurity, poor body muscle tone, possible heart defects that may compromise energy levels, large tongue or even infections. While all of these reasons are valid, it doesn’t mean that you cannot breastfeed your child.
Benefits Of Breast Milk To Babies With Down Syndrome
There are several benefits of breast milk to babies with down syndrome. They include:
- Breastfeeding can help protect your child from infections (remember risk is higher)
- Breastmilk can help improve brain development which is especially helpful for babies with down syndrome
- Mum may sometimes feel helpless if complications arise after birth of her child. Breastfeeding can help comfort both mum and baby and help them bond
- Breastmilk is easier to digest than formula (babies with down syndrome may have intestinal problems)
Possible challenges include:
- Separation due to Surgeries or prematurity. Early initiation of breastfeeding has been linked with breastfeeding success. Sometimes, your baby may have to be separated from you to the neonatal intensive care unit or even due to surgery. This separation can affect your milk supply.
- Low muscle tone. Your baby’s body may feel floppy while attempting to breastfeed. He may not be able to sustain a latch leading to poor transfer of milk. This can lead to weight loss and a dip in your supply.
- Low energy levels. Some babies with down syndrome are born with heart challenges. This can make them tire easily and they may not be able to stay at the breast long enough to get the hind milk or even enough milk. Hind milk is fattier and higher in calories. This may also lead to weight loss and a dip in your supply
- Mum is overwhelmed. In some cases, the parents are unaware that their child has down syndrome until delivery. The shock and anxiety that follows coupled with post labour exhaustion may contribute to a delay in mum’s milk coming in.
- Babies with down syndrome are often very sleepy. This may cause them to have low in take which can then negatively impact mum’s supply
What Can You Do?
- Skin to skin! I know I say this a loot…but the truth is, skin to skin is essential! Skin to skin can help set breastfeeding on the right path. It helps stabilize your baby’s temperature. It is comforting for you both. Ensure that you are awake during skin to skin time. Support your baby’s head if necessary. Ensure his nose and eye are uncovered. If mum is unable to, her partner or a close family member may do this as well.
- Get support from a lactation professional. Breastfeeding a baby with down syndrome may present with different challenges. Having someone to guide you through the process is very important. A lactation specialist can help resolve issues with maintaining your supply, latching and all things breastfeeding.
- Monitor feeds closely. First off, you want to ensure your baby is spending at least 20 minutes at the breast with good transfer of milk. Your baby should be fed 8-12 times daily. Monitor baby’s poop and pee output and weight gain. Be sensitive to baby’s cues. Feed regularly on demand if your baby is up to it!
- Buy a Breast Pump! It is common for separation to occur after delivery. Your baby may need to be in the NICU for a while. A high grade breast pump can be used in the meantime. Your baby will need your colostrum. A pump can come in handy if your baby is currently unable to latch. It can also help maintain your supply. Aim to pump as often as 8-12 times daily. Use hand expression, hands on pumping and warm compresses to improve your output
- Find a support group. Caring for a baby with down syndrome is tough and no one should have to go through it alone. Knowing that there are other mums going through similar struggles can be very helpful. If you’re in Nigeria, check http://downsyndrome-ng.org
- Use a firm nursing pillow. This can help support your baby’s body during breastfeeding. ensure to get a firm, hard support. Ensure your baby’s head and bottom are at the same level. You should also be in a comfortable position. Feel free to use a footstool if required
- Latching Positions. Latching may be a bit more difficult for you and your baby due to low muscle tone and a large tongue. You may find him slipping off the breast and unable to form a seal. You can help by supporting his jaw. Slide the hand under your breast forward, so you are supporting the breast with 3 fingers rather than 4. Form a U-shape with your thumb and forefinger to cradle your baby’s chin. This will help your baby press the nipple and areola between the gums. This move is called the ‘dancer hold’. If your baby is easily distracted, find a calm room to breastfeed in.
- Take care of you. Remember only a happy mum can raise a happy child. Lean on family and friends willing to support you. Take a walk. Stay hydrated and eat a lactation treat to up your supply if necessary. You’ve got this Mama!
If you have any questions, feel free to drop them in the comments or send me a mail at Maryam.firstname.lastname@example.org .