Clare Miller RGN RM
Minor disorders of pregnancy
Due to the laxity of tissues within EDS some of the minor disorders of pregnancy are more likely to occur in someone with EDS, these include:
This is indigestion marked by a burning sensation in the oesophagus, often with regurgitation of acid ﬂuid. Simple measures can be taken to reduce heartburn, including reducing the number of irritant foods eaten such as spicy, fatty foods, caffeine and alcohol, citrus fruits/juices. As it takes longer for food to move along the intestines whilst pregnant, eating your main meal at lunchtime gives more time for digestion. Alternatively you can eat small meals at regular intervals. Whilst in bed you can sleep in a more upright position. If the heartburn persists seek the GP's advice, he/she may need to prescribe antacids.
These can take the form of varicose veins, vulval or anal varicosities (haemorrhoids). The pregnancy hormone progesterone relaxes the smooth muscles of the veins and results in sluggish circulation:
Varicose veins: These are made worse by standing or sitting for long periods. Circulation will be improved if you exercise, for instance your feet/ankles by making circling movements with the ankle. The use of maternity support tights, available from chemists, will help the symptoms but will not prevent the varicose vein from emerging.
Haemorrhoids or piles: These are caused by a dilated rectal vein and can be internal or external. Preventing constipation can reduce the discomfort caused by haemorrhoids. Women should be advised to increase fibre and ﬂuid in their diet. Regular pelvic ﬂoor exercises improve the circulation. Avoidance of iron therapy, unless prescribed by a doctor, will reduce the risk of constipation. The use of a gel pad (a pad, which has gel in the middle that you freeze) can reduce swelling and the discomfort this causes. Gel pads should be covered in a thin cotton cloth and placed in the affected area for 20 minutes then removed; at least 2 hours should be left between gel treatments. If haemorrhoids are severe the mother should seek medical advice regarding treatment with ointments and/or suppositories.
Vulval varicosities: These are rare and painful. Pelvic ﬂoor exercises will help as will gel pads, mentioned above. These vulval varicosities do sometimes rupture at delivery causing a risk of haemorrhage (excessive bleeding).
This is an excessive amount of ﬂuid in the body tissues. In pregnancy this is common in face, fingers, vulva and lower limbs. Oedema is usually harmless but in severe cases is linked to pre eclampsia (a blood pressure problem in pregnancy). Oedema in the lower limbs can be improved by elevating the legs; it is important to have the feet higher than the level of the hips. In bed some pillows placed under the mattress will ensure the legs are elevated whilst sleeping.
Nausea and vomiting
Although this is not compounded by having EDS the consequences of regular vomiting will be more severe in the pregnant mother with EDS. Vomiting in pregnancy rarely persists past 16 weeks. If a mother is feeling nauseated or is vomiting acupressure bands may help. These are sold at most good chemists. The bands press on level P6 on the inside of the wrist and help reduce feelings of nausea and vomiting. Stem ginger is also a good non-pharmacological way of reducing nausea and vomiting; be vigilant as a lot of ginger biscuits only have ginger ﬂavouring in and no stem ginger so will not help. Avoiding food preparation, foods with strong smells, eating small meals regularly and having a blander diet than normal may all help. If the problem persists seeking medical advice is essential.
Symphysis pubis pain/dysfunction -
The symphysis pubis is the point at which the two halves of your pelvic bones meet at the front. To enable the baby to pass through the pelvis during delivery, the pelvic joints become looser in pregnancy. In EDS the joints are more lax to start with. However in some women this natural increase in the width of the symphysis pubis causes a range of painful symptoms caused by abnormal function in this joint. The pain is usually felt low down over the symphysis pubis, in the groin and lower abdomen and can radiate down the inner thighs. The pain can be mild to severe and is made worse by walking, all weight bearing activities, particularly those that include lifting one leg e.g. going upstairs, or parting the legs e.g. getting in and out of bath and car. What can be done to ease the symptoms?
• Reduce or stop any non-essential activities, avoid unnecessary activities, climbing stairs and shopping
• Wherever possible take the strain off the pelvis e.g. sit when doing kitchen activities
• Keep lifting to a minimum
• Always sit with your back and feet well supported
• Avoid taking weight on one leg e.g. putting on socks
• Keep legs as close together as is comfortable especially during activities such as getting in/out of bath, bed or car, turning over in bed
• Draw in the lower abdominal muscles to "brace" the pelvis when changing position, bending over and picking up objects
• If tolerated, wear a pelvic support as supplied by a physiotherapist. Maternity support underwear may help
• Elbow crutches will take considerable strain off the pelvis and allow less painful walking and weight bearing. For someone with EDS crutches may be less well tolerated, in cases like this seek advice from your physiotherapist.
• Tell the midwife that you have pain
• Tell the midwife how far your legs can be parted without pain
• Vaginal examinations may be performed either in side lying or in knees to chest position to avoid over-parting the legs
• The best position for delivery may be in side lying or kneeling upright with support.
After the birth
• The advice given above will be needed even if the pain has reduced following the birth. It is essential to avoid straining the pelvis so always "listen to your body" and move within your pain limits
• Bed rest for 24 to 48 hours may be necessary to allow acute pain to settle during which time a wheelchair should be provided to assist you getting to the toilet
• Take prescribed pain relief
• Accept help with caring for the baby and family
• If possible, stay on the same level as the bathroom and toilet until you can walk and climb stairs more easily.
• Gradually increase your activities as you feel able - how long this takes varies with each person.
Who can offer help?
Midwife: Inform your midwife of your symptoms, she will be able to give you support and advice and refer you to other specialists who can help.
Physiotherapist: An Obstetric Physiotherapist can offer various treatments. A support belt can be supplied. Your Physiotherapist may recommend Transcutaneous nerve stimulation (TENS) to relieve the pain.
General practitioner: Your GP can prescribe analgesia (painkillers) to help relieve the pain. If you are very disabled they may be able to arrange some home help.
Pain clinic: These clinics specialise in relieving and helping people with pain and can offer many forms of treatments for pain sufferers.
This is a fairly common problem during pregnancy in all women. However women with EDS often have problems with instability of the joints, lax ligaments and kyphoscoliosis (An abnormal curvature of the spine in which there is forward and sideways displacement). Pregnancy will exacerbate these problems.
Care of the back
Posture: Remember to choose a comfortable chair and position yourself well back in the chair with a cushion behind your lower back if necessary. The height of the seat should allow you to put your feet comfortably on the ﬂoor when you are sitting down. Whenever possible, use a leg rest or stool so that you can sit with your legs supported. Your heels should be higher than your seat and the back of your knees should be well supported.
When standing: Hold yourself tall with your tummy gently pulled in, bottom tucked under and your weight evenly spread between the heels and balls of your feet. Remember to relax your shoulders and hold them comfortably down. This helps to prevent problems with backache.
Shoes: Wear shoes with a ﬂat or medium heel, high-heeled shoes which throw your balance forward are to be avoided. Mule type sandals and slippers which do not fit securely can be particularly dangerous especially when going up and down stairs.
Housework: Remember to pace yourself. Try not to stoop when doing jobs; try to do some of the tasks sitting down e.g. ironing and food preparation.
Lifting: Avoid lifting if at all possible, e.g. mattress and shopping basket. Bend your knees instead of your back when bending or lifting and keep the object close to you, not at arms' length. In this way the strain is taken on the strong muscles of the thighs and buttocks and not the back. Avoid twisting movements whilst lifting as they can damage the spine.
Who can offer help?
Self-help: Attending local Aquanatal exercise classes or back care classes may help to ease backache. For some backache, such as sciatica, lying on the side away from the discomfort so that the affected leg is uppermost. Pillows should be placed strategically to support the whole limb.
Midwife: Inform your midwife of your symptoms, she will be able to give you support and advice and refer you to other specialists who can help.
General practitioner: Your GP can prescribe analgesia (painkillers) to help relieve the pain.
Physiotherapist: A physiotherapist may give you a programme of exercises designed to maintain muscle strength. She/he may recommend some hydrotherapy. Pelvic belts or lumbosacral corsets offer some support.
Breast changes in pregnancy/post delivery
Breast changes in pregnancy are a result of increased hormone activity. The breasts enlarge due to increased tissue growth, blood supply and fat deposition. Postnatally engorgement (an excessive filling of the breast) occurs around day 3 or 4. The breasts can become hard, painful and ﬂushed. If breastfeeding, early unrestricted feeding helps to prevent engorgement. With EDS hyperelastic skin can mean the breast tissues require more support.
Breast care: Due to hyperelastic skin, bras should offer good support. They should be full cup, not under wired, and have a wide shoulder strap to help distribute the weight of the breast. Sports bras and cropped top bras usually offer excellent support. If breasts are very full and heavy wearing a bra at night may help. If not breastfeeding then the engorgement will gradually improve by day 7-post-delivery. Use of a cold compress on the breasts (cool white cabbage leaves work wonders!) and a mild pain reliever such as paracetamol will alleviate symptoms.
This is a cut into the vaginal opening and tears may be less likely in types of EDS with hypermobility. An episiotomy may be done for a medical reason i.e. due to distress of the foetus or need for a forceps delivery. In cases where suturing is necessary the following should be considered:
• Care should be taken when placing the mother's legs in stirrups. Hypermobility of joints makes dislocation of the hips more likely if due care and attention are not taken.
• Some people with EDS (particularly patients with the hypermobility type) may not respond at all to normal doses of analgesia and thus may need larger doses. This is important for the doctor or midwife to know when they are injecting the local anaesthetic (numbing injection) into the perineum (part of the structure around the lower part of the vagina) prior to suturing the tear or episiotomy.
• Quick dissolving sutures, such as vicryl rapide, should be avoided with EDS patients with delayed wound healing. In a patient with this type of EDS, the sutures should be left in twice to three times longer. Ask your consultant obstetrician to write something in your medical records about which sutures to use and how long they should be left in prior to you delivering. This will allow the delivery suite time to order the sutures if they are not normal stock on the ward. If sutures need to be removed it is a good idea if only alternate sutures are removed initially so healing can be observed prior to all the sutures being removed.
• Analgesia (Pain relief): Paracetamol may be sufficient, however if a stronger pain reliever is required paracetamol and an anti-inﬂammatory can be used (anti-inﬂammatories should always be taken with food). Codeine based drugs should be avoided if possible as they can cause constipation.
• Good hygiene is essential - a bath, shower, jugs of water or a clean plant sprayer can all be used to keep the perineum clean. Use of a hairdryer to dry the area that has been stitched is not only more hygienic but also less painful.
If you have had a caesarean section there are certain things, which
should be thought about:
• Quick dissolving sutures (see above)
• Support your wound with your hand if coughing/sneezing or changing position
• Avoid getting your wound wet for 5 to 7 days if you have the type of EDS with delayed wound healing
• Although strong analgesics (painkillers) such as codeine based drugs will be required, beware as these can cause constipation. To counteract this, increase your daily ﬂuid and fibre intake
• Whilst dealing with your infant have everything at the correct height for you to prevent bending. Have things close at hand to avoid twisting movements
• If you are breastfeeding try the underarm 'rugby ball' method of feeding to avoid lying your baby across your wound. Your midwife will happily show you how to feed your baby like this.
With tasks such as changing and bathing try to have the infant at the right height for your back. Have everything you need at hand i.e. wipes, nappy, clothes as this will mean there is no unnecessary twisting.
If you wish to lay your baby on the ﬂoor place the infant's mat near something such as a table or sofa. You can use this for support whilst trying to get onto the ﬂoor next to your infant and it will help with leverage when you are trying to stand up again.
Bathing your baby
When looking to purchase a bath decide where you are going to place it for use. Will you need help carrying it? Baths tend to be heavy when filled with water. You may choose to bath your baby in the kitchen so you can place the bath on the worktop, slide it under the tap to fill and slide it back for use; this works well if the work top is the right height for you. Some baths sit over a normal bath so slide under the taps to fill and have a plug to pull to empty. These seem like an excellent idea. However with a young baby whom you have to hold in the bath, you will either have to bend or kneel whilst the infant is in the water. You could choose to sit on a stool beside the bath; however to hold the infant in the water you will have to twist. You can purchase different equipment to lay your young baby on in the bath such as a moulded sponge, which you lay the infant on, a 'deck chair' style seat which you place the infant on or a polystyrene-filled ﬂoating device which you place the infant on. All these seem like a good idea but it is worth remembering some young babies can feel insecure if not held. One of the simplest ideas for a young baby is placing them in a clean washing-up bowl at the sink to bathe, this reduces the lifting and carrying of water and is usually at the correct height for the user. For an older infant who has good head control, you can purchase bath seats, which can be used in an ordinary bath. The infant sits in this and you can sit beside them on a stool and sponge them whilst they sit.
Remember you will spend a lot of time feeding your infant, therefore it is imperative that you are comfortable. In the early weeks whilst learning to breastfeed it is easier to breastfeed in a chair. You will need a chair with a straight back with good back support so you do not have to lean over your infant or lean too far back. Leaning over the baby will cause strain on your neck and back and leaning back tends to pull the breast away from the infant. It is easier to feed a baby if the baby is at breast height, as you will not have to support the infant's weight throughout the feed. Pillows, cushions or a rolled up blanket should facilitate this. Because you will be resting your baby on pillows a ﬂat lap is essential. This is usually achieved by having your feet ﬂat on the ﬂoor. If the chair is too high to achieve this then place your feet on a low stool or place something like a telephone directory under your feet. When feeding your baby try different positions at each feed i.e. across the body and underarm, as a change in feeding position may reduce muscle strain. The underarm feeding position 'rugby hold' is a good choice if you have had a caesarean as it allows you to feed without laying the baby on your wound. Remember when positioning the baby on the breast, always take the baby to the breast, not the breast to the baby. Trying to manoeuvre your breast to get the baby to take it can lead you into all sorts of uncomfortable positions! If you always bring the baby to your breast and you are comfortable then you will be more relaxed to feed.
Prams, pushchairs and car seats.
When purchasing equipment for your infant there are a few things that you need to keep in mind when you have EDS. These are weight, how heavy is the piece of equipment that you are looking to buy, ease of use and how awkward is the piece of equipment to fold down/place in the car. Car seats are always ungainly to carry and heavy even with a young baby in. You will need to decide which car seat is easiest for you, one that clips onto the pram or a car seat with an in-car base. Both of these systems have different plus points. With a car seat that clips onto the pram you can wheel the baby to and from the car, negating the need to carry the car seat. With the in-car base there is no bend or stretching in the car trying to secure the car seat with the seat belt. You are now able to purchase prams and pushchairs that are very light weight, however when buying a pram/pushchair see how easy you find it to fold down as you will have to do this frequently. If it is difficult for you to manage, you may find it better to buy one that weighs slightly more but which folds down without a struggle. Always remember when lifting keep the item you are lifting close to your body and always bend the knees. Also check the height of the handle for pushing as you do not want to stoop. Some prams and pushchairs have adjustable handles.
N.B. The above are only guidelines and each individual pregnancy should be fully monitored by medical professionals.
The views expressed are those of the author(s) and should not be construed to represent the opinions or policy of the Ehlers-Danlos Support UK or its Trustees.