Raynauds Phenomenon, and High Arched Palate
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.
I've worked with a few mothers with this syndrome. I haven't
seen a high arched palate to be associated with Reynaud's
1. Keep a warm, moist cloth to put over the nipple immediately
after nursing. A disposable diaper heated in a microwave stays
warm for a long time.
2. Niacin, the vitamin, causes flushing. It feels like a menopausal
hot flash. This can increase the blood flow to the nipple. I have
not seen any medical research about this treatment.
3. The syndrome may be related to low estrogen levels.
Elizabeth in California
From: Laureen Lawlor-Smith Subject: Raynaud's phenomenon
The following is part of a paper I will be presenting at the
NMAAconference in October. It summarises the treatment of
Raynaud's phenomenon affecting the nipples of breastfeeding
women. I hope you find it of use.
The management of Raynaud's phenomenon in the lactating
woman is limited by the need to ensure the safety of any treatment
not only for herself but also for her breastfeeding infant. Avoiding
cold stress is the mainstay of treatment of
Raynaud'sphenomenon. It is of interest that not only the affected
part but the whole body needs to be kept warm to avoid reflex
sympathetic vasoconstriction (Coffman 1990). Patients should
therefore be advised to breastfeed in a warm environment, to
wear warm clothing and to avoid cold exposure at all times.
Once painful vasospasm has occurred warming the nipples (for
example by using warm compresses) may be helpful. Smoking
should be avoided in patients with Raynaud's phenomenon.
Smoking as little as two cigarettes per day has been shown to
increase vascular resistance by 100% and decrease cutaneous
blood flow by 40% (Cardelli and Kleinsmith 1989). Smoking
may therefore potentiate Raynaud's phenomenon.Caffeine may
exacerbate Raynaud's phenomenon in some patients and should
therefore be avoided. Although it is a vasodilator, its use may be
associated with rebound vasoconstriction through central
mechanisms thereby precipitating symptoms of Raynaud's
phenomenon (Adee 1993).Moderate aerobic exercise has been
shown to be of benefit in Raynaud's phenomenon and may be
worth a trial in the breastfeeding patient (Cardelli and Kleinsmith
The use of calcium (2000mg per day) and magnesium (1000mg
per day) has been reported anecdotally as a treatment for nipple
vasospasm (Maher 1988).There is no scientific evidence to date
however to support the efficacy of this regimen.Evening primrose
oil (Belch et al 1985) and fish oil (Digiacomo et al 1989) have
individually been found to be of benefit to patients with primary
Raynaud's phenomenon. Both agents are certainly safe for the
lactating woman and her baby. However large doses of these
agents are required to improve symptoms - 12 capsules per day
of evening primrose oil equivalent to 540 mgs of gamma linoleic
acid or 12 fish oil capsules per day equivalent to 3.96 gms of
eicosapentanoic acid and 2.64 gms of docosahexanoic acid.
Furthermore it takes 6 weeks to get any significant clinical
responsewith either of these agents and they are therefore not
useful in theshort term. A lactating woman presenting with acute
nipple pain secondary to vasospasm is therefore likely to require
more immediate relief at least in the interim.
Of all drugs investigated thus far for the treatment of Raynaud's
phenomenon, nifedipine, a calcium channel blocker of the
dihydropyridine group has been the most effective (Wollersheim
and Van Zweiten 1993). In primary Raynaud's' phenomenon
nifedipine is associated with reductions in attack frequency
between 50 and 91% (Rodheffer et al 1983, Corbin et al1986
and Kahan et al 1983). When given to a lactating woman less
than 5% of the total dose of nifedipine appears in her breast milk
(Ehrenkranz et al 1989). The administration of nifedipine does not
alter breast milk composition (Ehrenkranz et al 1989). Treating a
breastfeeding woman with nifedipine therefore appears to pose no
risk to her infant. Nifedipine appears therefore to be a safe and
rational choice for the treatment of Raynaud's phenomenon
affecting the nipples of lactating women. The successful use of
nifedipine in treating this condition has recently been described in
five breastfeeding patients
(Lawlor-Smith and Lawlor-Smith 1997).
Side effects to nifedipine are said to occur in approximately one
third of patients and are usually secondary to peripheral
vasodilatation. These may include headache, flushing, dizziness,
reflex tachycardia and peripheral oedema (Cooke and Nicolaides
1990). Side effects may be minimised by either starting at a small
dose such as 5mg three times per day and slowly increasing until
an optimal clinical response is achieved (Cooke and Nicolaides
1990) or by using a slow release preparation to avoid the
peakblood levels associated with standard therapy (Belch 1991).
Side effects occurred in three of five breastfeeding patients
treated for nipple vasospasm. Side effects settled in one patient
spontaneously and in the remaining two with a change in dose
(Lawlor-Smith and Lawlor-Smith 1997).The reference for the use
of nifedipine to treat affected nipples is Lawlor-Smith LS,
Lawlor-Smith CL. Raynaud's Phenomenon of the Nipple: A
preventable cause of breastfeeding failure? MJA 1997;166:448. I
would start this woman on 30mg of slow-release nifedipine as a
single daily dose and then assess response.
I have no experience with Raynaud's as here in Puerto Rico (the Caribbean Tropics) we have little opportunity for getting chilled nipples. However, your second question related to high palates is my specialty, as I see many children with it.
First of all - FANTASTIC that you have been able to breastfeed this long, and I hope you choose to continue. The babies I see with high palates cause their moms so much pain, that many want to quit. The problem is, the nipple gets "stuck" in the palate and doesn't go back to the soft palate where it should be - this causes very sore nipples as baby is sucking the nipple instead of breastfeeding. It can also cause slow or no weight gain.
If mom's breast tissue is pliant enough, she can teach the baby to take more of the breast in the mouth, thus making sure the nipple goes behind a sort of ridge that is formed by the high palate and allowing it to reach the right area. This may be what you need to do when your nipples get sore - it may be the baby is not "eating" but rather sucking the nipple - and causing it to become sore.
Jeanette Panchula, BSW, RN, IBCLC, LLLL
Project Director - Proyecto Lacta - Puerto Rico
Lactancia Materna '98 - La Mejor Inversion
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