Breastfeeding with MS (Multiple Sclerosis)

My breastfeeding journey started before I even had Thomas. After attending the Base Hospital’s parenting class, the nurse who ran it suggested I see their lactation consultant (LC) at some point prior to having my baby. I was nervous about breastfeeding and medications. You see, I was diagnosed with Multiple Sclerosis (MS) in 2011. I was in contact with my MS Nurse who was great in providing me with a lot of information on breastfeeding and MS, and how it can reduce the baby’s risk of developing autoimmune diseases such as MS (and Psoriasis which my husband has).

When I attended the first appointment with the LC she gave me a whole lot of information and I left feeling a little overwhelmed. She discussed the benefits of breastfeeding and the effect on MS. She also discussed how having a Caesarean Section (CS) can make it harder for the milk to come in and it may take a little longer. I also have anxiety, hypothyroidism and I was 38 years old, and she said that these factors shouldn’t have any impact on breastfeeding. I was provided with some little syringes and given instructions on how to collect collostram before the baby comes and freezing it in case I need it. She also gave me the details of Rodney Whyte, a pharmacist who works at the Monash Drug Information Centre in case I needed to contact him regarding any drugs I was considering taking for my MS.

Thomas arrived nearly 2 weeks late after a 30 hour labour which ended in an emergency C-section. The LC must have known something! He latched on straight after delivery, but after that I had a lot of difficulty getting him to latch on. I think every midwife in the hospital had a go at trying to get him on there. My boobs felt like public property! Thomas had developed an infection at the time of birth and had to have a cannula inserted in order to get antibiotics, as a result we had to stay for 7 days in the hospital. The frozen syringes of collostram came in handy at this stage. Staying in hospital this long was like torture, no sleep and having to pump my breasts to get what milk I could get out of them. I had to top up his feeds using formula. This situation was not ideal, and wasn’t my idea of feeding my baby. Through the hospital I had arranged to see the LC the day after we were discharged from the hospital. We saw her the day after we were discharged.

My husband ended up calling her the ‘baby whisperer’ as he felt she had the answers to everything baby related. She was remarkable. First off, she got Thomas to try and latch on. Had a look in his mouth and said he had a bubble palate (which is a high palate). She took out a nipple shield and showed me how to use it. The first time Thomas latched on using it I was elated! It felt so right, and he was latching really well. We took the shield home with a follow up appointment two weeks later. We were doing ok with the shield, but I found it very frustrating to use. It was hard to place on, kept flipping off and was overall awkward to use, but my baby was breastfeeding. We only had to use a couple of “top up” feeds with formula in that time. I was pretty determined to not formula feed if I could help it. This went on for 6 weeks until Thomas finally graduated from nipple shield to doing it on his own! Yay!!!

I could lie and say the rest is history, but it was a tough and long road ahead of us. Thomas had silent reflux, and anyone who has had a baby with it would agree it is horrible! He was constantly arching his back, pulling off the nipple crying, and was constantly irritable and crying. I thought it was something I was doing wrong. I even called up the Breastfeeding Australia hotline for help at one point. The woman was very reassuring and helpful – I recommend giving them a call if you need to – don’t wait until you’re at your wits end! Thomas took 6 weeks of mixed feeding (breast and formula) and another 6 weeks of expressing and breast feeding without formula. I was very glad to eventually be exclusively breast feeding Over the 20 months I have been breastfeeding, I have had a blocked duct twice and never had mastitis. You could call me lucky, which I consider myself to be.
My MS fatigue reared its ugly head when Thomas was around 4 ½ months old. I had to phone Rodney Whyte (Monash Drug Info Centre) as I was considering taking a few different drugs to combat it and was hoping there was something that would be breastfeeding compatible. Well, I was pleasantly surprised as Rodney was SO informative and knowledgeable on the topic! He informed me the drug I was taking pre-pregnancy was OK to take now as the molecular weight was too big to enter breast milk. Bottom line, after some discussion we decided a number of drugs could be helpful and not harmful. He also told me about the LactMed app which I downloaded onto my iPad. I was a happy camper, albeit a fatigued one. I also ended up informing my GP and my Neurologist about Rodney as they weren’t aware of the service that the Monash Centre offered.

During this time I received services from an OT, Physio and psychologist to try and get myself back on track. My fatigue became that bad that I was showering sitting down, and my OT organised a house cleaner from MS Australia to help clean my house every fortnight. I felt if I was showered and kept Thomas alive it was a good day. Once I started on the medications the fatigue eased up and I have now been able to do a lot more! I’m now to a more manageable level of fatigue, which is good for me.

A final word.
I get all sorts of comments about feeding him – mostly from family and mostly negative. I put the odd post on my FB page about how great and beneficial extended breastfeeding can be. I’m still enjoying our journey and even though it is tiring on my body, I’m grateful to be able to offer my son this gift. I will contact my LC to let her know I’m still boobing and to say thanks for giving me the confidence to do so, as I would have given up a long time ago.

I really think with a good support network around you, research and organisations such as Breastfeeding Australia and Facebook support groups you can do it too. Don’t give up too easily, as I said, I could have a number of times but stuck it through. The biting stage doesn’t last forever, neither does the nursing strikes. Put yourself into your baby’s shoes and try to work out what the problem is and please, try EVERYTHING before giving up. Then you won’t have any regrets and can say to yourself honestly, “well, I tried all I could and it just didn’t work”. I hope my story helps some of you who are considering quitting to try a little bit harder.

– Honnie