Epilepsy, Nursing and Caring for your Baby
Nursing your baby with your own milk when you have a chronic condition can place extra challenges on you as new parents. Concerns about medication, how this will affect your baby and uniquely with epilepsy, fears of seizures that are triggered by hormonal change, sleep deprivation and anxiety. I have been speaking to parents with epilepsy over that last while with regard to their experience of breastfeeding and caring for their babies, their fears and anxieties and expectations. This post is about what they had to say. It has been a positive experience and to be honest I was really taken with their independence of mind and although they had very real fears, they worked around them. They all had their own solutions to the challenges they faced, it was not always all or nothing with regard to feeding. However, all these families knew that breastmilk was better for their babies.
Meave said “No one told her not to breastfeed so she just went ahead and did it. Not breastfeeding was not going to make life easier”
Sleep deprivation was by far the biggest fear amongst the women I spoke to and indeed supported through my work as a lactation consultant and practice nurse. It is well known that babies need frequent feeding and can have cluster feeding times during the day and but not so often at night. As babies transition to life outside the womb being close to their mother is as important as frequent feeding.
All parents spoke about getting rest and sleep when their babies slept, while in hospital and in early days. Almost all the women I spoke to said, they never had a problem falling asleep. While at home partners were around all the time in the early weeks and they would carry their baby, watch the baby while the mothers had a rest or slept, then would bring the baby to them for feeding.
While in hospital some parents asked the midwives to bring the baby to them for night feeds and other parents gave permission for their baby to have a bottle of formula.
One first time parent told me she feed her baby herself for all feeds up until 9 weeks, she was surprised that she managed, she didn’t think too much about it because she would fall back asleep quite easily. She reckoned she was just in “Mom Mode”. She also said her partner would be awake with her when feeding and that made her feel secure.
Another parent also fed their baby herself for all feedings initially, she got up from the bed. She found this exhausting and knew it this was unsustainable. She decided that it was safer for her and her family given the type of seizures she had, to feed her baby in the bed and eventually made an informed decision around sleeping safely with her baby.
Remember seizures are diverse and what works for one family will not work for another. It depends on seizure type, medications and the baby. Babies born prematurely are not recommended to bed share with parents. The general recommendation is that people with epilepsy don’t bed share with their babies. That doesn’t mean you cannot feed your baby in the bed at night time. Another family although did not sleep with their baby, after months of feeding and caring decided that they all got better sleep together. The reality is that some families do decide to bed share when the time and situation is right for them. Many parents had bedside cribs so their baby was close and they could easily comfort or reach their baby safely. Others put the mattress on the floor because it felt safer for them. Here are some links to safe sleep information and normal infant sleep behaviour.
https://www.basisonline.org.uk/
https://www.llli.org/the-safe-sleep-seven/
One mother told me she very quickly stopped changing the nappy at every feed at night and that way time awake was shortened and there was less disturbance.
Almost all the parents I spoke to expressed milk and agreed that their partner give their baby a bottle so that they got a run of a few hours’ sleep ranging from 4 hour to 6 hours. So, they would feed their baby and hand over baby to partner for caring and settling, they would go to bed and sleep and the next feed would be a bottle and then the feed after that would be a breast feed again. There is a perception that a night’s sleep is eight hours however it appears that 6 hours is accepted as a night sleep following a conversation with Nurse specialist in epilepsy. All families had interrupted sleep and some nights were harder than others, they had flexible arrangements for these nights such as having partner with them during the wakeful times, giving the baby a bottle of expressed breastmilk or if that wasn’t available, formula.
One the many positive features of nursing your baby is that it releases oxytocin and oxytocin bring a sense of calm and reduces the stress hormone cortisol. This helps with better quality sleep and restfulness; it enhances mood and promotes secure attachment with your baby. There are studies researching the use of oxytocin in reducing seizure activity in certain types of epilepsy. Any parent that I spoke to who experienced seizures in the postnatal period still continued to breastfeed.
When asked for some gems and advice for families breastfeeding with epilepsy this is what some families said:
“Make life as easy as possible for yourself and your baby”
“keep life simple” “Don’t look at what other people can do look at what you can do”
“Not Breastfeeding is not going to make your life easier,” this mother in particular found making bottle a hassle and it was easier for her to feed her baby herself. Preparing bottles was just more work in her mind.
Some parents said that breastfeeding meant they could sit down and they found that restful, otherwise if their baby was being bottle fed by someone else, they would probably feel compelled to do other work rather than rest.
“Know and accept your limitations”. I think this parent meant, knowing your limitations and accepting them took pressure off her and she worked around them to make breastfeeding work for her.
Another parent advised that if she felt “weird” or “Off” she would, put her baby in the crib, called someone to mind the baby and be around so she wasn’t alone.
“Expressing breastmilk was a good idea”
“Take opportunities to rest”
“Get used to Cobwebs”
One parent I spoke to with epilepsy said she joined Cuidiu and went to their meetings and found out lots of information about breastfeeding and caring for her baby while she was pregnant
Here are my tips for Starting and Sustaining Breastfeeding
Learn all you can about normal breastfeeding behaviour and normal new born behaviour. You can gather your information in lots of ways through classes, videos on-line, following Instagram accounts of lactation consultants, and organisations like La Leche league, Cuidiu. There are plenty of classes available through HSE and privately. Taking a class is not the beginning and end of your feeding and parenting education and preparation. Read all you can, look at all you can, talk to other parents, join support groups before your baby is born. Get your partner involved as feeding is a partnership. with information they will know how to support you, they will be as invested in the goodness of human milk as you. This is a link to a live I did with a young mother with epilepsy who breastfed her baby. Lots of tips in it
https://www.instagram.com/p/CZ9z1aGJrLa/
Ø Explore videos of feeding positions and ask midwives to help with side lying positions in the early days after birth particularly if your birth was a caesarean birth.
https://globalhealthmedia.org/videos/breastfeeding-positions/?portfolioID=10861
Ø Learn how to express some colostrum antenatally for feeding in the hospital and continue express colostrum during your hospital stay for a feed at night that can be given by the midwives. You can ask that the colostrum be given by spoon,” by syringe or by cup or bottle.
https://breastfeeding.support/expressing-colostrum-antenatally/
https://www.instagram.com/p/B-kT10_hWHW/?hl=en
Ø If you are thinking of expressing milk or pumping, do your research about breast pumps before your baby is born. Get advice regarding the best pump to suit your needs, read reviews.
Ø Have plenty of help so you can focus on yourself and your baby. Time will help getting feeding established and getting to know nature and the rhythms of your baby. Work with their nature and rhythm.
Ø Postpartum Doulas provide a very supportive and personalised service to families. They can provide practical support, help with feeding help with baby care and offer reassurance to you as you navigate the uncertainty of early feeding. https://doula.ie/
Ø Babies love to be close to you, this helps to growth , development and a feeling of security, when you keep them close, you are more likely to pick up early feeding cues, or notice changes in your baby too. Babywearing is a great way to keep your baby close and still have some hands free. Baby wearing is not suitable for every person with epilepsy. Talk to your epilepsy nurse specialist or neurologist. If you can’t babywear, your partner can.
Ø Support groups sustain breastfeeding, supportive relationships help to keep you going when you have challenging times. Groups like: Cuidiu,https://www.cuidiu.ie/supports_breastfeeding_breastfeedinggroups
La Leche League support groups https://www.lalecheleagueireland.com/groups/
Friends of Breastfeeding support groups, https://www.friendsofbreastfeeding.ie/local-support/
Groups run on line by lactation consultants and PHNs.
Ø If the challenges appear to be overwhelming look for professional help. Seek the help from a lactation consultant. https://www.alcireland.ie/find-a-consultant/
Ø Have a comfortable place to breastfeed your baby, ensure you feel physically supported when you breastfeed, ensure you neck shoulders and back are supported. Think of your own comfort first as they will help with feeding and prevent tense shoulders, neck and back.
Ø Sometimes it can be help to feed on the floor on cushions if you are concerned about your epilepsy.
Ø Change you baby on the floor in the early days while you get to grip with feeding and caring for you baby OR have you partner do the changing and bathing. As the parents I spoke to became more confident in caring and feeding their baby, they appeared to relax the safety measures they put in place in those early weeks.
Ø If you plan to give your baby a bottle of expressed breastmilk, collect or pump in the morning time when your breasts are fuller. If you pump directly after you feed you will get smaller amounts (which is normal )15ml to 30 mls depending on how well your baby feeds in the early weeks. This will increase in the later weeks as your milk production peaks at about 4 to 6 weeks. If you wait for about 30 to 60 minutes after a feed you will get more from your pump. If you do this at the same time every day this becomes part of your milk production.
Ø Babies tend to take more volume from a bottle but be mindful of breastfeeding norms in terms of volume. A baby will probably take 30 to 45 mls per feed around the first week, then this can increase to 60 mls to 90 mls in the following weeks. After 6 to 8 weeks depending on how many times you baby breastfeeds a day it will be around 70 to 150 mls per feed. Nursing babies feed between 8 and 10 times in 24 hours.
Ø if you are replacing breastmilk with formula, bear in mind that babies tend to take more volume when drinking from a bottle and formula milk stays in their stomach longer therefore, they may sleep for longer periods. What this means is that without consideration, your milk production may be compromised. Once again think of breastfeeding norms with regard to volume and pacing feeds and consider waiting until your milk production is established before you give a bottle of formula. If you do find you milk production is slowing, contact a lactation consultant for a review and ways to recalibrate your production.
Ø If your baby needs supplements because of slow or low weight gain or poor feeding, there are many ways to supplement. You can supplement at the breast with a tube, you can finger feed the supplement using a fine feeding tube, you can cup feed or use paced feeding with a bottle. It is best to have professional help in these situations. Once again you may be lucky to have a PHN who is a lactation consultant, there may be a hospital breastfeeding clinic available or you could seek help privately https://www.alcireland.ie/find-a-consultant/
Ø Use pace bottle feeding and feed in a responsive way.
https://www.youtube.com/watch?v=TuZXD1hIW8Q
https://www.youtube.com/watch?v=5hEq2QpQFT8
Ø Eat well and regularly as sometimes skipping opportunities to eat can trigger seizure activity. you will probably know your own limits yourself. You will be naturally hungrier and thirstier as a result of breastfeeding your baby or any expressing you do. Ask for dinners from families and accept offers of help. Have high energy easily prepared snacks, dates, nuts, milk shakes or power balls.
Ø Be flexible in your outlook, some challenges may change things for you and a feeding intervention may be necessary. However, if your goal is to breastfeed /chest feed more often than not you can come back from these interventions - Protect your milk production by expressing. It does not have to be all or nothing.
Remember you have a super power – human milk!
My sincere thanks to the amazing women I spoke to in preparing for this blog Meave,Charlie, Claire, Jane, Liz, Olivia and Sinead.