Breastfeeding When Your Child Has Retinoblastoma
Monday August 1, 2022
Breastfeeding is one of the many decisions parents navigate when their baby or toddler has retinoblastoma. Paediatric nurse and child life specialist, Cindy Pilchuk, explores the benefits and challenges of breastfeeding through treatment, with practical tips for continuing or re-starting breastfeeding, weaning after diagnosis, maintaining milk supply, and comfort supports for both mother and child.
Your child has been diagnosed with retinoblastoma, and it has rocked your world. Now you have to make decisions – big decisions – about what is best for your child, for you, and for your family. One of those decisions might be about breastfeeding.
Whatever decision you make, it is yours to make. There are no right or wrong answers for this. Breastfeeding is a very personal and complex decision, and one that should be made in discussion with your child’s healthcare team. Whether your questions and concerns are about continuing or re-starting breastfeeding, weaning, maintaining your milk supply, or comforting your child during procedures, this article is here to help.
Breastfeeding can be both a benefit and a challenge during cancer treatment, for you and your child and for many different reasons. Let’s take a closer look at both.
Benefits of Breastfeeding Your Child With Cancer
Breastmilk is considered the best food source for infants and young children. It is easily digested and full of essential nutrients for your child to grow and develop. Breastmilk also provides your child with passive immunity as it contains antibodies that help to fight infection, proteins that balance the immune system inflammatory response, and probiotic factors that support gut health and the immune response.
During treatment, your child will continue to benefit from the power of breastmilk whether you choose to continue breastfeeding, or provide your expressed breastmilk for nutritional support.
Research shows there is a link between breastfeeding and a lower risk to childhood leukemia and lymphoma. However, no link has been found between breastfeeding and the prevention, cause or prognosis of retinoblastoma.
Beyond the nutritional benefits of breastmilk, breastfeeding offers many psychological benefits to both the child and mother.
Breastfeeding encourages the social and emotional development of children through increased contact, touch, and sensitivity between mother and child. Breastfeeding is a wonderful facilitator for mother-child bonding and attachment, and feelings of security and safety within the child.
For mothers, breastfeeding has been correlated with a decrease in anxiety and stress, and increased mood, reduced heartrate and blood pressure. As well as reduced cortisol response when faced with social stressors.
After being weaned off the breast, it is not uncommon for a child to come back to breastfeeding during treatment. This is a natural and healthy form of comfort and security. Maybe you had to stop breastfeeding during treatment, and would like to now start again.
Because the mechanisms of breastfeeding rely on a supply and demand basis – it is possible to reinitiate breastfeeding (relactation), whether after weaning or a treatment-induced interruption. Even if it is a bit slow to start, any and all stimulation at the breast sends a message to your brain that it needs to keep up with demand and make more milk.
Here are some simple tips to aid relactation:
- Put your child to your breast as often as possible.
- Try to empty the breast completely, as empty breasts make milk.
- Pump or hand express between feeds, even during the night, to increase the stimulation necessary for milk production.
This will get easier once your milk supply starts to come in. Herbs such as blessed thistle and fenugreek, and some medications can help support your milk supply and get you started again. Please speak to a healthcare professional about this option as needed.
The decision to restart breastfeeding is personal and complex. If your child is only looking for comfort, breastfeeding is only one way to provide it – other strategies can support your child’s coping. For suggestions, please see the below section “when you are not able to breastfeed”.
Studies have shown a significant reduction in pain response for neonates (up to 28 days old) when breastfeeding during heel lance or venepuncture procedures, compared to other methods of comfort (cuddling, sucrose, pacifier, swaddling). The neonates who were breastfed during the procedure had a lower heartrate, total crying time was less, and neonatal infant pain scale scores were lower.
For babies between 28 days and up to a year, studies show that breastfeeding during invasive or painful procedures (for example: vaccination) lowered the behavioural pain response (total cry time, and pain scores using validated age-appropriate pain scales) compared to other methods of comfort. However, in this age group, breastfeeding did not consistently lower changes in physiological responses, such has heart rate and breathing.
It is challenging to find studies on breastfeeding a child greater than one year old during a painful or invasive procedure. However, if breastfeeding has always been a calming activity for your child, one that offers a sense of closeness and security, it will also provide comfort during a painful or invasive procedure, offering your child a way to cope and recover during RB treatment.
Breastfeeding a baby with cancer has many benefits. There may also be challenges for both parent and child. Let’s look at the challenges, and potential solutions.
Breastfeeding Challenges During Childhood Cancer
Measuring Ins and Outs
With any kind of cancer treatment, simple everyday activities like eating and using the toilet can become medicalized. Counting caloric intake, measuring “ins and outs”, or weight gain and loss. These are all important indicators of how well your child is managing with their cancer therapy, and keeping their body as strong as it can be to cope throughout the treatment.
Cancer treatment and recovery takes a lot of energy; your child needs fuel to power through. There are times when breastmilk will not provide enough calories. In this situation, it is important to speak to your healthcare team and create a feeding plan for your child. It may be possible to fortify your breastmilk or use supplementation (Artificial Breastmilk or formula), or intravenous nutritional supplementation (TPN) may be necessary.
NPO – Nothing By Mouth
This is probably one of the hardest matters to deal with before a procedure or general anaesthetic. Not only are you being required to withhold food from a hungry child, you may also be withholding a comfort strategy.
In order for the general anaesthesia to be safe, your child’s stomach needs to be empty. Although breastmilk is easy to digest, it is not considered a clear fluid because it forms a semi-solid consistency in the stomach that can be aspirated during the procedure. Guidelines for breastmilk are therefore different from other fluids and solid food.
Here are some suggestions to help you and your child get through the experience.
Talk with the Anaesthetist
Speak directly with the anesthesiologist to determine the exact amount of time your child cannot breastfeed before a procedure. Although this varies, the most common procedural fasting time for a breastfed infant is four hours prior to procedure time. Unlike artificial breast milk (formula) and solid foods, breastmilk is easily and more quickly digested.
If possible, schedule the procedure for a time when you think your child will be able to best handle a four-hour stretch without feeding. This may be first thing in the morning, or during a time they are most playful and active, and therefore most easily distracted.
Try to offer distraction through play and positive experiences – this might include offering a new toy or book, singing songs, or walking around the hospital or clinic and pointing out new things to see such as a picture on the wall.
Comforting your child with lots of hugs, tickles and cuddles is also important, however, your child might associate these activities with breastfeeding. If that is the case, you may need another family or friend to help with this distraction strategy.
Discuss Post-Procedure Breastfeeding
Discuss with the healthcare team when you can re-initiate breastfeeding after the procedure. In most cases, once your child is fully awake and out of the recovery room, you can initiate breastfeeding again right away.
Maintain Breast Care and Milk Supply
Please remember that while you are not breastfeeding, breast care and maintaining your milk supply are still very important. To do this, you will most likely need to express your milk. Expressed milk can be stored in a bottle or breastmilk bag and left at room temperature for up to 6 hours. If you think you will need to store it in a fridge or cooler, speak to your healthcare team about the hospital’s breastmilk storage policy. See the section below on expressing milk.
Side Effects of Treatment
Exhaustion, no energy, mouth sores, tummy upset, not feeling well enough to eat anything, or the opposite – wanting to eat everything. Any of these experiences will impact breastfeeding, and make it more challenging. Breast feeding through the baby’s chemotherapy treatment can be particularly testing. Be gentle and patient with yourself and your child, this is tough work.
If you find these challenges are too much, or you have questions, speak to your healthcare team or breastfeeding champion to help get you through. Sources of support include the hospital’s lactation consultant, other breastfeeding mothers going through a similar situation, and community organizations such as La Leche League.
Decide what your goal is for breastfeeding: is it the main source of nutrition, or is it primarily for comfort and to promote attachment? Deciding on a goal will help you cope with the challenges as you have something to focus on and work towards.
If you experience mastitis and your child is neutropenic from treatment, please speak with your child’s healthcare team, and ask for their direction on continuing to breastfeed during this time. If you need to take an antibiotic to treat your mastitis, speak to your health care provider to choose an antibiotic that is compatible with breastfeeding and your child’s current cancer therapy / medication.
Effects of Stress on the Breastfeeding Mother
Oxytocin is the main hormone responsible for milk let down. Unfortunately, when a breastfeeding mother is experiencing heightened stress, such as coping with a sick child, the hormones released during the stress response (mainly adrenaline) will inhibit oxytocin release. Breastmilk supply is also based on supply and demand, so disruptions such as procedures requiring NPO make breastfeeding a challenge.
Self-care and finding ways to stay calm and relaxed may sound like a luxury at this time. But they are very important for your breastmilk production, as well as your ability to cope and support your child.
Here are some tips for encouraging breastmilk production during this stressful time:
Whether it is a warm towel, or a heating pad on your breasts, warmth will help to produce a let down. Apply warmth to your breasts for one to two minutes before a feed or a pump.
Skin to Skin Contact
Any skin to skin contact, whether it is your child laying on your chest (Kangaroo Care) or you gently stroking your collar bone and shoulders, will help with oxytocin release and let down.
Scent is really important for oxytocin release and let down. Take a moment to smell the top of your child’s head, or a piece of clothing your child recently wore. Soothing scents such as vanilla or lavender can also help as they promote a sense of relaxation.
Music or Soothing Sounds
Music, humming, white noise, and nature sounds like birdsong, flowing water, and gentle waves can all aid in your feeling calm and relaxed.
Laughter is a powerful way to decrease your stress hormones such as adrenaline that interfere with oxytocin release. Watching a funny movie or TV show, listening to a comedy performance, or reading a funny book or comic can be good medicine for your milk production.
Evaluate Your Breastfeeding Goals
If you find that breastfeeding is increasing your stress load, and the challenges outweigh the benefits, it is time to re-evaluate your goals for breastfeeding. Remember the decision to breastfeed is about what is best for you, your child, and your family.
Milk Supply and Expressing Milk
Breastmilk production is based on supply and demand. Empty breasts produce milk, and full breasts do not. If you choose to continue breastfeeding, expressing milk will be Important at various times throughout your child’s treatment. It is also necessary during weaning to ensure a supply when needed, and to maintain breast health.
Maintaining an adequate milk supply can be a challenge during treatment interruptions, or when relactating after weaning. Hand expression on its own, or in combination with a pump, is a very effective method for expressing breastmilk, and providing breast stimulation to increase your milk supply. La Leche League International provides a detailed hand expression resource.
This video from Stanford Health is a wonderful resource about breast health and maintaining your milk supply with a pump and/or hand expression, without using medication. An excellent demonstration of hand expression is included from 5:15.
When the time comes to start weaning your child from the breast, the following suggestions will help both you and your child:
Take Your Time
Weaning is a slow and gradual process. It is better to move slowly so your child can get used to new feeding and comfort styles, as well as conditioning your breasts to decrease supply without causing plugged ducts or engorgement issues.
Begin by dropping the feed that is the easiest to forget – the one your child is least interested in. This is often in the middle of the day when your child is playful and active, and has more energy to eat solids.
Create New Routines
Change daily routines that you and your child perform before a feed, such as sitting in a rocking chair, or reading a story together. Instead, sit on the floor and play an interactive game together. Ask other family or friends to offer play and distraction when a feed would be provided.
Increase Solids and Comfort
Breastfeeding in the early morning and before nighttime sleep are usually the most difficult and last to be dropped. Take it slow. Start to offer more solid foods and snacks to decrease feelings of hunger, and increase closeness and comfort in other ways to help your child feel safe and secure. Eventually replacing the breast with another comfort strategy.
When You Are Not Able to Breastfeed
There are many different reasons why you may not able to start, or continue breastfeeding. It is important to take a moment to acknowledge the effort you have put into making that decision, and accepting the situation. Not breastfeeding feels like a great relief to some, and a great loss to others.
If you find this decision causes you emotional stress and upset, reach out to the support systems around you for encouragement. Your support system may be members of the healthcare team, community breastfeeding organizations, family and friends, or other parents in the childhood cancer community who have had a similar life experience, or are currently going through it.
Pain Management and Comfort Techniques
Breastfeeding and breastmilk are only one way to comfort a child with pain or during painful or invasive procedures. Sick Kids Hospital in Toronto, Canada has a wonderful resource on managing pain for infants and toddlers that includes a “3P” approach – physical, psychological, pharmacological. This approach includes the ABCD’s to promote psychological wellbeing:
- A = Assess your own anxiety.
- B = Belly breathe. This is important to keep you calm, and when you are calm (calm heartrate, regular breathing rate), your child will also feel calm.
- C = Use calm, close cuddles for comfort.
- D = Distract – offer comfort and other activities, both during procedures and after the peak distress has passed.
WE C Hope provides information on varied pain management techniques and infant mental health supports:
If you are no longer able to breastfeed, it is very important that you take care of your breasts to avoid mastitis, engorgement, and plugged ducts. When your breasts feel full, express just enough milk to provide you with some comfort. The goal is to find comfort without providing stimulation, which will decrease the demand messages to your brain.
After you have expressed, apply a cold wet cloth to the breasts to reduce swelling and offer comfort. Wear breast pads if needed for leaking. Wear a supportive bra, but do not bind your breasts. Binding your breasts is an old fashioned technique that leads to issues with plugged ducts, and possibly mastitis. Try to avoid bras with underwire.
I’ll be honest, this was a very difficult article to write. There is simply very little information and research on the topic of breastfeeding, never mind breastfeeding a child undergoing treatment for cancer.
Most available information is expert opinion rather than being research based. I reached out to many of my colleagues in the oncology field – doctors, lactation consultants, and dieticians – and all offered similar advice.
Theirs is a medical perspective, and it is important to keep in mind that you and your child are part of that medical team and decision making process. There is no right or wrong answer, which can also make the decision making more difficult. This is your decision, and only you know what is best for you and your child.
Both the World Health Organization (WHO) and American Academy of Pediatrics (AAP) recommend breastfeeding for the child’s first two years or more. Remember, your child’s needs are different from a child who has a more typical development. How long you breastfeed for (even if beyond 2 years) is a very personal choice, and your decision alone.
A final thought to keep in mind: research shows that when weaning from the breast is naturally initiated by the child, it will usually occur between 2 and 4 years of age.
Breastfeeding Champions – La Leche League
La Leche League International has chapters around the world, including the US, Canada, and UK. The website includes extensive breastfeeding resources, and links to local breastfeeding champions who can provide you with information and support.
About the Author
Cindy Pilchuk is first and foremost a mother to three perfectly wonderful, imperfect children who are her inspiration and hope. After that, she is a Registered Nurse and Certified Child Life Specialist. She holds a Master’s of Science degree in Child Life and Pediatric Psychosocial Care.
Cindy has focused her entire 23 year career thus far supporting children and families to cope with stress. She has a particular interest in early brain development and attachment, and how stress and trauma effects early brain development and behaviour. For the past 13 years, she has worked as a public health nurse in the Child Health and Development division at Toronto Public Health.
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