Raynauds Phenomenon, and High Arched Palate


  Painful Breastfeeding

                                                       by Cecilia Moen

Ingrid was born at Ostra Hospital in Goteborg, Sweden in December 1996. We had breastfeeding problems from the start: first we were seperated at birth and then later she developed a fever and was taken to another ward where she was given formula (despite my protests).

Poor Ingrid! I tried to breastfeed her, but she was so confused she just cried. It would take up to two hours for her just to get latched on.  So I pumped and fed her with a spoon (after having my milk weighed by staff). I felt like a total failure. After five days I finally found  someone who had the necessary skills to get Ingrid latched on again properly. After the longest week of my life we went home.

A week later an ache began deep in the center of my breasts. They felt bruised and my nipples started to hurt, shifting in colour from red to white. When I asked, I was told this was perfectly normal.  I had a thrush test done, that proved negative. As the days passed nursing became more and more painful. At three weeks I began using a nipple shield just to cope.  At the weekly check-ups Ingrid was gaining weight slowly. I was asked to supplement with formula, but  refused. Then I went home and cried, feeling like a total failure again.

When Ingrid increased her feedings at around five weeks I used Syntocinon spray to help the let-down (and lessen the pressure on the nipple). I began to wonder if something wasn't seriously wrong. I tried to get a friend to nurse Ingrid, hoping she would be able to say if Ingrid was doing something wrong with her mouth, but Ingrid refused to cooperate.

So I went back to the hospital, to the nurse that had helped Ingrid latch-on, and asked her to watch a feeding. She looked at my breasts afterwards and said that something was wrong with Ingrid's mouth. Then she opened her mouth and looked inside. "Aha!" She said and pointed. "She has a high-arched palate. There is nothing you can do, but it will get better after three months. But you must stop using that nipple shield."

I compromised and used the shield at night and nothing during the day. Even with the shield the pain was excrutiating. It felt like someone was sawing away at my nipples. But finally knowing what the problem was made it easier for me to cope. Ingrid was only allowed to feed for short stretches at a time. I tried to make sure she was getting enough hind-milk by nursing from one breast for four hours, then switching. And I started reading all the literature I could find about breastfeeding. I felt so stupid! I had been so positive about breastfeeding, and it had never crossed my mind that I could have difficulties. And now here it looked like I might have to give up?

I was having bouts of mastitis often, two or three times a month, probably because my breasts weren't being emptied properly. And the nipple shield was causing skin burns on my breasts. I couldn't believe that it was supposed to be so difficult. Everyday I would tell myself that tomorrow I'd go rent an electric pump, but having used one at the hospital after the birth I associated it to failure and humiliation, so everyday I ended up thinking, one more day.

So I struggled on, hoping the words "it will get better" were true. Even though that one nurse had said my pains were because of Ingrid's high-arched palate, every other person I spoke to had never heard of such a thing. And I couldn't find a single reference to it in any breastfeeding books. I started to lose faith... My nipples were now turning a dark purple for long periods. The magic date of three months came and went and things just felt like they were getting worse. When Ingrid increased her feedings at about this time I HATED breastfeeding. I was ready to give up. It hurt so much I didn't even want to see Ingrid sometimes. I felt so much despair during this period.

Then I found a tip in La Leche League's book about pulling down the chin and saying "open" or something similar. Sometimes this seemed to have an effect, and it felt as if the sawing pain was starting to go away. At four months I experienced a pain-free nursing! It was wonderful to actually be able to enjoy Ingrid at the breast. But as the sawing pains were disappearing the other pains seemed to be increasing.

My breasts ached before feeds and after feeds. It felt like they were going to explode, as if they were frozen solid. It was worst at night when it would take me an hour to fall asleep again after nursing because of the pain. I took to wearing two sets of woolen nursing pads inside my bra and several layers of sweaters on top of that, even in bed. Even with all that I would have to pinch my nipples to get them "going" again. Sometimes it felt like they were ready to drop off.

They had started a special lactation study of women with breastfeeding pains at a local hospital.  I went there and was photographed before and after a feed, and examined by several doctors. I was told I had "white nipple syndrome", but they didn't know what it was or what to do about it. They said my blood vessels were having spasms.

I called the Swedish equivalent of La Leche League for about the 20th time and this time I got a tip about a homeopath that had helped many women with thrush. I called and he had just had a cancellation! This felt like a good sign. He looked at my eyes, asked a few questions and handed me a bunch of remedies*. It took two days and almost all the pain disappeared.

I couldn't believe it! It felt like a miracle. I could sleep! I could wear a t-shirt! And I was finally enjoying breastfeeding as much as my daughter. After a check-up I got some more remedies and then the last of it cleared up.

Two months later the Swedish equivalent of La Leche League published a short article that two doctors in Australia had proven that Raynaud's phenomenon can affect the nipples during breastfeeding. Then the article described every one of my symptoms: aches before and after feedings, nipples shifting in colour from red to white to purple. The pain it caused varied from discomfort to the inability to breastfeed.

Looking back I can see I suffered from two things: Ingrid's high arched palate giving me the same symptoms as bad positioning and Raynaud's phenomenon making the whole breasts sore and the nipples extra sensitive.

I wrote this story for a breastfeeding magazine in Sweden.  We received many calls from women who had experienced much of what I went through. Many quit breastfeeding and some cried remembering the pain of having failed at breastfeeding. I hope my story will spread the word that these problems have a name and that there is help. I am still breastfeeding my lovely 20-month-old Ingrid as I write and I am so thankful that Ingrid will have a say in the when and how of her weaning as I originally planned.

*I was given combination remedies. The first one was called "Mucal" or something like that, and I also ate Agnus Castor. Later I was given the combination remedy called "Lymfo". Going to a homeopath here in Sweden is pretty controversial. It is against the law for them to treat pregnant or lactating women or children under the age of eight. So I was lucky finding someone who wanted to help. Some of the symptoms came back later with my menses, and I then tried taking Gingko Biloba instead of using homeopathic medicine. I felt this also had a positive effect.