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Mood disorder and pregnancy:
Having children If you would like to comment on this paper or obtain more copies of this paper please write to: Depression and Mood Disorders
Association of NSW The Mental Health Information
Service
This paper came out of a group discussion we had in the early 1980s in the support groups for people living with manic depressive illness (now known as bipolar mood disorder). Over 200 people came to a series of support groups held throughout the 1980s and 1990s at Gladesville, Leichhardt, North Sydney, Bondi Junction, Campbelltown, Wollongong and Riverwood A number of themes emerged from our discussions. The issues for women living with manic depressive illness or other mood disorders were different compared to the life experience of men. Pregnancy, childbirth and related events affecting hormonal levels such as menstrual cycles, miscarriage or abortion appeared to be triggers for some episodes of mood disorder in women. Emotional support was different: many women had lost relationships or been deserted by partners during episodes of mood disorder. Many of the women coming along to the support groups had been recently diagnosed as having manic depressive illness. Diagnosis usually followed a severe episode of either manic illness or depression following a history of milder episodes of mood disorder. The age of diagnosis was on average late 20s and early 30s with a period of ten to fifteen years of untreated and undiagnosed mood disorder before that. Most of us had been in relationships during our years of living with untreated mood disorder. Mood disorder had disrupted many relationships and left us confused as to who we really were and what kind of relationship would work for us. Some of us had been adopted – our mothers had been forced to relinquish us because of their own mental illness. Others of us had been pressured to relinquish our own babies during episodes of post partum psychosis or depression. Most of us had been in relationships that fell apart during our episodes of mental ill health. Many of us had come from families where it was known that someone in the family had mental illness or who had vanished without trace or who had spent time in an institution. Being diagnosed with a serious mental illness confronts you with a number of dilemmas and decisions to make. In one way, the diagnosis is a relief: what is happening to you is known about, other people have experienced it and survived and there is treatment. Since the late 1950s a wide range of drugs have been developed to treat episodes of manic illness, depression and to prevent further episodes of mood illness. Our mothers might not have had choices but with better diagnosis, treatment, information and support there were choices we could make. Changes in community mental health services mean that most people with mental health problems can be treated while living at home and do not need to spend long periods in psychiatric institutions. The Changes During my experience as a community member of the Guardianship Tribunal of NSW I came across Maude (not her real name). Maude had been hospitalized in her late twenties following what was probably a post partum psychosis. She had been sent to a large regional psychiatric hospital a long way from her home in a small country town. Her husband was discouraged from visiting her – and indeed the difficulties in getting to the hospital were a further discouragement. Her son was told that she had died while he was a baby. Maude lived all her life in the psychiatric hospital. She was active in ward activities and apart from periods of depression, had no recurrence of the severe illness that was the reason for her admission. She had no relatives listed on her hospital file and had no contacts outside the hospital. Maude was part of a group of hundreds of patients living in psychiatric hospitals in the 1960s and 1970s. People who had spent so many years in institutions that they no longer had any contacts outside the hospital and had little or no experience of living as an independent adult in the community. During a review of patients at the hospital and their legal status, the members of the Guardianship Tribunal noted that Maude was about to have her 100th birthday. A telegram from the Queen was organized and the story appeared in the regional newspaper. Her son recognized Maude and made contact with her. Maude is now living in a nursing home close to her son and other family members. What would Maude’s life be like had she been born fifty years later? Better medications could have limited her illness. Better community support would have meant that she may have been able to be cared for at home. Local hospital mental health services may have meant that she remained close to her family while receiving hospital care. A single episode of illness would not have meant a lifetime in institutional care. Changing attitudes Attitudes about parents with mental illness have changed to some extent but a diagnosis of mental illness today still means that there is an assumption that parents living with a mental illness might be unfit parents. There is still a lack of services to adequately support parents living with mental health problems. A partner’s mental health can still be raised in bitter acrimonious custody battles. But with the right support and information, many of us do successfully choose to have children and have combined management of our illness with a happy family. We hope this booklet will inspire some of you to have children and to take action to get better supports and medical services for people living with mood disorder. Should we have Children? The question "Should we have children?" is one that causes many people with manic depressive illness and their partners a great deal of anguish. Some of these concerns are:
This booklet looks at these and other issues. It isn’t a definitive booklet on pregnancy - there are plenty of excellent books around that deal with general issues of pregnancy. This booklet refers mostly to bipolar mood disorder (or manic depressive illness), but, because some members of the Depression and Mood Disorders Association experience depression (unipolar affective disorder) some information on depression and medication is also included. Manic depressive illness can affect either the mother or the father. Either parent can pass on the genetic material that gives an individual the predisposition for mood disorder. So the decision about whether or not to have children is not just the concern of the woman in the relationship. It’s a decision to be made in tandem. Pregnancy shouldn’t be an automatic response to getting married or settling down, or other people’s expectations that you must have a family, or the fact that you’re fertile, or that it’s natural and you’d better have a baby before it’s too late. It’s a decision that needs to be thought through by both partners - carefully. The gene gamble The question "Will our son/daughter inherit manic depressive illness?" is often posed as the central issue in deciding whether or not to have children. But it isn’t the main issue for a number of reasons:
Working out the odds: here are some ‘facts’ about the inheritance of manic depressive illness:
These figures suggest that while genetic factors are important, other factors play a role in the development of mood disorder. These may be environmental, such as a highly stressful living situation, how well you handle stress or whether you’re unfortunate enough to have several catastrophic events occurring at once (deaths of people you care about, illness in close family members, serious physical illness or accidents) which trigger the latent gene(s) into action.
Do you want a family? Why? What sort of social and family supports can you count on? How supportive is your partner? UNIPOLAR AFFECTIVE DISORDER (Endogenous Depression or Major Depressive Disorder) Some researchers say that unipolar affective disorders and manic depressive illness don’t run in the same families - that is, that they are different illnesses and are inherited in different ways. Others say that people who experience recurrent cycles of depression are in fact experiencing the same physical illness as people with manic depressive illness. Medical science has quite a way to go before we know everything about manic depressive illness and mood disorders. Here are some vital statistics about depressive illnesses:
These statistics will indicate to you that the genetic link in unipolar affective disorders is not as strong as in manic depressive illness The environmental factors are very important in determining whether someone will experience a major depressive illness. Deciding about having a family Here are some questions and issues to focus on when you are deciding whether or not to have children:
Hypomania, sexual activity and getting pregnant If you decide to have a family then you’ll need to plan ahead, so avoid accidents. Many people with mood disorder are more active sexually when they are hypomanic or manic: this can be the worst time to get pregnant accidentally. Women who get pregnant during a hypomanic or manic phase may experience serious depression during the pregnancy. If either partner is manic depressive, but especially if you’re female and have had episodes of manic depressive illness, it’s best to plan your pregnancy. Having children is not a step to be taken lightly. Raising them requires fine-tuned survival skills - especially if you have episodes of mood disorder. There are two basic reasons why you should plan your pregnancy:
Partner understanding and support is important: make sure both partners recognise the importance of safe and reliable contraception. If you’re male and taking lithium you won’t need to stop taking it during the pregnancy! It will have no ill effect on the foetus. However, animal studies have suggested that men who take lithium may not be as fertile as men who don’t. If you and your partner have been unsuccessfully trying to have a baby you may like to discuss this with your doctor. LITHIUM DURING PREGNANCY Lithium is, generally speaking, a safe and effective drug which is used to prevent mood swings. Some people call it their miracle drug although for others it doesn’t work so well. The effectiveness of lithium has undoubtedly resulted in the preservation of many marriages that would previously have been disrupted. It may even have increased the birth rate in families where one or both partners have been successfully treated. It improves the prospects of a reasonably stable and nurturing family for children. As a general rule of thumb, avoid taking any drug (and include nicotine and alcohol here) during pregnancy. This is because they may cause deformities in the baby or have other unwanted side effects on either the mother of the child. However, although it is important to weigh up the potential risk to the baby, it is also vital to recognise any potential risk to the mother-to-be of not taking lithium during the pregnancy. Manic depressive illness is a serious illness. Sometimes psychiatrists and other health workers do not appreciate the suffering of people who experience mood swings or the risks of uncontrolled manic or depressed behaviour. So the individual woman needs to consider her situation. Some women know from past experience that they become severely manic or depressed if they stop taking lithium. In such cases the risk of deformities in the child needs to be weighed against the risk to the mother. If you think that you ought to continue taking lithium or other mood stabilising medication during pregnancy then you will need to discuss this with your doctor. She or he may suggest that you take other medications such as neuropletics or anti-depressant medication instead as these are thought to be safer during pregnancy. Even if lithium is the drug of choice, don’t despair because most babies whose mothers took lithium during pregnancy had no ill effects. The doctor who is caring for you during your pregnancy needs to understand what manic depressive illness is and should liaise with the doctor who is treating you for mood disorder. LITHIUM AND THE FIRST THREE MONTHS OF PREGNANCY It is best to avoid taking lithium during the first three months of pregnancy (the first trimester). During this period the organs of the foetus are being formed. Lithium crosses the placenta easily so the baby gets as much lithium as you do. So obviously if you plan to fall pregnant it’s best to go off lithium before conceiving. Remember, you’ll need to come off lithium slowly. Using lithium in the first trimester increases the likelihood of having a baby who has Ebstein’s Anomaly (a rare heart condition) and other cardio-vascular abnormalities. Major heart defects have been reported in about 8% of babies born to mothers who took lithium in the first trimester. Because abnormal births are reported more often than normal ones, the actual incidence is probably lower than 8%. In fact most experts agree that this risk isn’t great enough to justify a therapeutic abortion. If you’re taking lithium during these first three months you’ll need to:
LITHIUM IN LATER PREGNANCY It is best to avoid taking lithium in the second and third trimesters (months 4-9). Even though the danger period for causing birth defects is over it is hard to maintain therapeutic lithium levels. Why can’t I take lithium during the rest of the pregnancy? The lithium content of the body is determined by intake (dose) and renal (kidney) excretion rate (how much you pee out). In pregnant women lithium is excreted more rapidly. During the second half of pregnancy you excrete 30-50% more lithium than you would normally. This means that a pregnant woman needs to take a higher lithium dose in order to keep a therapeutic level. You’ll also need more frequent serum lithium levels done as well. WHEN I’M TAKING LITHIUM, WHAT ELSE DO I KEEP IN MIND?
JUST BEFORE THE BIRTH During the last months of pregnancy lithium is excreted more rapidly through the kidneys. Therefore it may be necessary to increase your dose in order to keep your lithium level constant and your mood stable. However, immediately after delivery, the renal clearance level (how much you excrete) rapidly falls to pre-pregnancy levels (normal rate of excretion). The serum lithium level increases rapidly. To cope with this either of two approaches is adopted:
Once the baby is born you should be taking the same dose as before pregnancy. Of course it will need to be carefully monitored until your body gets back to normal functioning. It is essential that your gynaecologist/obstetrician is aware that you are taking lithium. He or she must liaise with your psychiatrist. THE BIRTH Lithium can potentiate (or make stronger) the effects of anaesthetics and muscle relaxants which may be given during labour. So tell everyone who is working with you during the birth that you are taking lithium. If the mother took lithium during pregnancy, the baby will be born with lithium in its blood stream. Often this poses no problems but occasionally babies are born with signs of lithium toxicity. The signs of lithium toxicity in babies are: lethargy; cyanosis (blueish skin colour); poor suck; enlarged liver; floppiness; shallow breathing; hypothermia. The baby will recover within ten days as the lithium is excreted. Because new born babies often get dehydrated (through not drinking enough or vomiting) and because their temperature can fluctuate, the doctors and nurses will keep a close eye on the baby. BIRTH DEFECTS The large majority of babies born to women who took lithium during early pregnancy are completely normal. The main risk to these babies is that they may develop cardio-vascular abnormalities - Ebstein’s Anomaly is one such problem. This can be diagnosed when the foetus is about 25 weeks old by an echocardiogram, a test which will show up many cardio-vascular problems. After the birth the baby can undergo other tests, such as an electro-cardio-gram or a cross section echocardiogram, if the doctor thinks that there is any risk to the baby. Ebstein’s Anomaly and many other cardio-vascular defects can be corrected surgically. Professor Mogens Shou who researched the use of lithium to treat mood disorder has followed up many babies born to women who took lithium during pregnancy and who had no visible malformations at birth. He found that they did not develop any problems later in life because they were exposed to lithium in the uterus. If you take lithium during the first three months of pregnancy you are urged to send details of the baby to an International Lithium Register in the United States of America. The address is: The Lithium Register,
BREASTFEEDING Lithium is readily transferred to the baby through breast milk. Some researchers say that since the baby was exposed to lithium in the uterus then it is all right to breastfeed but to carefully look for signs of toxicity in the baby. Breastfeeding carries lots of benefits for both the mother and the baby:
Other doctors advise mothers who are taking lithium not to breastfeed, especially if they did not take lithium during pregnancy. Research on animals suggests that a new-born baby’s kidneys may be abnormally sensitive to lithium and as a consequence may be damaged by it. Breastfeeding isn’t straightforward even for women who aren’t taking medication. Some babies have no problems taking to the breast but others do. Breastfeeding can be physically quite draining for the mother. So if you decide not to breastfeed, you do not need to feel guilty. GUIDELINES FOR WOMEN TAKING LITHIUM DURING PREGNANCY
OTHER MEDICATION AND TREATMENTS DURING PREGNANCY Serotonin-specific Reuptake Inhibitors (SSRI's) These drugs, along with the tricyclic and tetracyclic drugs and the monaomine oxidase inhibitor drugs are considered the major antidepressant drugs; they are also effective in a wide range of disorders, including bipolar I disorder, dysthymic disorder, eating disorders, panic disorder, obsessive-compulsive disorder, and borderline personality disorder. Because they generally have fewer adverse side effects than other classes of antidepressants they are more widely prescribed; Side Effects The most common adverse side effects involve the central nervous system and the gastrointestinal system; they include headache, nervousness, insomnia, drowsiness, anxiety, agitation, nausea, diarrorhea, anorexia, and dyspepsia. More rarely people taking SSRI drugs may experience sexual dysfunction – difficulty getting an erection or getting aroused or difficulty getting to orgasm. or allergic reactions (rashes). These drugs are generally considered to well tolerated, and some adverse symptoms may lessen or disappear with continued use. Some of the generic names follow (trade names in parenthesis)
Tricyclic Anti-depressants These drugs have been in use for over twenty years so have been reasonably well researched. These are considered to be relatively safe for use during pregnancy, but try to avoid using them in the first trimester. Tricyclic and tetracyclic antidepressant drugs
Neuroleptic and antipsychotic medications These are also considered to be relatively safe to use during pregnancy. Again try to avoid the first trimester - especially weeks 6-10. They are a good alternative to lithium. If you use them up until time of delivery you will need to watch for withdrawal signs in the baby. These may not occur until 3-6 weeks after the birth. The signs in the baby are: jitteriness; irritability; excessive crying and sucking. If these occur you must keep the baby quiet; reduce stimuli; provide a dummy between feeds so the baby has something to suck on; hold the baby in an upright position if you pick it up. Neuroleptic drugs are transferred in breast milk. If the mother is taking large doses, the baby may become sedated and this may have long term effects on its developing nervous system. Your doctor will need to advise you about what is appropriate. Neuroleptic and antipsychotic drugs
Newer antipsychotic drugs have fewer unwanted effects than the older drugs and may also be more effective in helping with depression. Newer antipsychotic drugs
Sedatives and Hypnotic drugs These drugs are used to improve sleeping, reduce muscle tension and reduce anxiety. Avoid taking these in the first trimester. Avoid taking them at the time of delivery. Avoid taking them while breastfeeding, especially if combined with other medication. Intermittent use is probably OK as is taking small doses. Use other medication preferably. Sedative drugs can mask a developing manic episode and won’t stop the manic episode from getting worse. If you are having difficulties sleeping, these drugs may work as a short term solution but a mood stabilizer should also be considered to prevent a manic episode. Sedative Hypnotic Drugs
DRUGS USED TO TREAT ANXIETY AND TENSION
Electroconvulsive therapy (ECT) Electroconvulsive therapy (ECT) is considered relatively safe for use during pregnancy. ECT releases a number of neurotransmitters in the brain and can lift depression, or, if given during acute mania, end the manic epsiode without the need for high doses of neuroleptic drugs. It can work far more quickly than medication and is most often used when the person is severely distressed and cannot take mood altering medications such as antidepressant or neueroleptic drugs. If this procedure is used the baby’s heart beat will need to be monitored both during the ECT and for several hours afterwards. MOOD SWINGS AFTER THE BIRTH The ‘Blues’ Many women experience mood swings following the birth of their babies. Their feelings can range from detachment ‘is this baby really mine?’, to great joy and satisfaction, to weepiness, to feeling let down. These mood swings are caused by the huge physical and emotional stresses of childbirth. If you talk to other mothers, you’ll find that these experiences are very, very common. Psychosis Women who have previously experienced episodes of bipolar affective disorder have a much greater risk of experiencing post natal mania or depression than other women with no history of affective disorder. Approximately 40% of women who have previously had episodes of mania and depression may experience a major episode after the birth of their baby. Some women who have no personal or family history of psychiatric illness also experience psychosis after childbirth. Plans to make to avoid a potential crisis Plan beforehand what to do if you do develop symptoms of serious mood disorder.
Having children - Our Stories It was a planned and wanted pregnancy, totally normal, I was disgustingly healthy and had a normal labour...About a month after the birth, I was totally incapable of doing more than feeding the baby and washing nappies.... I had a feeling it wasn’t just tiredness but didn’t know what to call it. David (husband) was fed up with me and we were both at a loss as to what to do next. I saw a succession of doctors, about six or so and a social worker. The doctors were all pretty quick with the drugs and the social worker suggested I join a club! I was also doing some odd things. I would go shopping and load the trolley with all the orange (or red or green) objects I could find, then leave it laden and leave the shop without buying anything. Things came to a head when the Mother’s and Babies Sister came to see me and find out why I hadn’t taken (baby) Eleanor to the clinic. She told me about a very understanding doctor who would help me...I was admitted to Sunshine Psychiatric Hospital and spent 7 weeks there... I saw my psychiatrist 3 times during my stay. She answered none of my questions and would explain nothing...It was never explained why I might have suffered p.n.d...My husband ended up discharging me. The most negative things I can think of the whole experience are the:
Positive:
Jenny So You Want To Have A Baby… Fran Gunsberger Leaupepe I have written this article from the woman’s point of view BUT I believe any couple planning a pregnancy should consider these issues. If the man has bipolar (manic depressive) disorder, then issues of financial security, stability and permanency of the relationship, capacity to cope with normal day-to-day issues and personal differences are the FIRST issues to assess and consider. If financial stability, lack of family/friend supports or erratic/unpredictable/difficult to monitor and treat mood swings are COMMON, then extra thought should be taken. An unplanned pregnancy will require immediate medical and counselling advice. MY STORY I was 36, (my husband also), married and busy in my work (qualified social worker). We had not married in order to have children. We knew each other more than two years, we were busy and believed that God would know what was best considering in our lives, my medical past. I had one major horrific depression followed by a short manic episode at 25 years of age, then a long and difficult recovery before getting back to work part time. Then after successful control and maintenance on lithium for 7 years, I won an international scholarship to study overseas. I believed I was well enough to stop the lithium there. I was in a country where I could speak the language. With a massive manic episode, wanderings around the country (having forgotten all I knew) caught by the police, horrific hospitalisations for many months and finally rescued by my parents, I returned home to another very lengthy period of recovery and rehabilitation and back on the lithium etc and eventually job hunting. After 15 months in the job and early on in our courtship, I had a less severe manic episode. I was on lithium and it helped to take me out of the psychosis speedily with several other medications and excellent therapy from my psychiatrist (I had been with him 14 years altogether). I was ready to believe (with God’s help) that we could bring a child into the world and that my husband and I could manage with help: we were both 39 and had observed that our well younger friends did not find the parenting business easy either. We thank God that our children are 10 and 6 (both breast fed to about 17 months and 3 miscarriages in between them) and that we are now into the next stage of parenting, ’taxi service’ to after school activities and the issues of discipline! We take it all as it comes. WHAT IS NEEDED IN THE OVERALL PLAN? FIRST - a meaningful relationship with your psychiatrist, if you haven’t got one, find one preferably one who has visiting rights to the obstetrics hospital you have found or are planning to choose. Someone who will be willing to work together with you, your husband and your obstetrician and who is able to assist you in your decision to have a child. You should present or prepare a written history of your health, illness, and episodes. This may include at least one joint session with you and your husband. SECOND - a joint discussion with a doctor, gynaecologist, obstetrician BEFORE conception (if possible). Besides having bipolar disorder it is important to discuss other genetic issues, discuss fertility, gynaecological issues, other medical problems that may occur as well as present information of your psychiatric history. Check out his or her views on planned caesarean delivery, concerns of natural delivery, their knowledge or willingness to obtain information on lithium. Lithium and breast-feeding, eg. last episode, frequency, severity etc family and other supports. Note: An unplanned pregnancy (or unwanted by one party) or other complications surrounding the pregnancy and subsequent birth of a child into an unstable or shaky relationship can increase the likelihood of depression and future breakdown etc. Ensure that the obstetrician will be able to cooperate with the psychiatrist during and after delivery (if signs of depression etc appear) THIRD - consider the role of your family doctor/GP who may be able to make some suggestions on choice of specialist and relative possibilities of shared care etc and assist in pre planning eg recommend to go to Tresilian or Karitane Mother Craft Hospital (note: you can contact these services. A social worker or director will give details and the father can stay overnight as well. According to your Health Fund, the baby is the ‘patient’, check first. FOURTH - Consider contacting a paediatrician at a children’s hospital. If you plan to breast feed in the light of the literature, the paediatrician can monitor mother’s milk and blood samples of the baby from birth to satisfy all the parties. The amount of lithium crossing into the milk supply and then into the baby (compared to body weight of the newborn) is extremely small and should not affect the baby. FIFTH - If you have any other health problems, allergy, diabetes etc, it is important that all doctors etc know about everything. Blood tests such as serum lithium level may be needed every three months starting immediately after birth - especially if lithium is reintroduced after delivery and especially if continued throughout pregnancy. If over 37 years old, your obstetrician will recommend other tests to check the progress of the pregnancy. SIXTH - Reading. It is most important to be well informed about all these areas to reduce the risk of difficulties related to mood disorder. as well as pregnancy, delivery and the post natal period. Note: That much of the literature still says that a woman with M.D. should not become pregnant and definitely should not breastfeed. You should learn about:
Details of these services can be found at your local council, social worker, antenatal clinic etc. It is important to have a good knowledge of bipolar mood disorder. Your own pattern is unique so you should to discuss this with your doctor(s). Together with your husband/partner, try to analyse your pattern so that if there is a change throughout the pregnancy, the objective input from the partner will be important to the doctor(s) Learn about lithium and other mood stabilisers and the reasons that medical literature and psychiatrists are very careful in using lithium or other mood stabilisers in pregnancy. During pregnancy especially the first trimester and during breast feeding, postnatal reaction, merits of planned caesarean -vs.- natural delivery, are also important to reduce possible extreme postnatal depression. Considering Breast Feeding? You must have total support of a partner e.g. consider the baby in bed together, mastitis and other breast-feeding problems (including serious infections, expressing and storing) complimentary feeding. Also other supports in learning lactation right from the start. Lots of advantages in winter and going out, but needs correct help to get a good start. Consideration of bottle-feeding requires correct sterilisation, who will do it, getting up in the night to warm bottles? Correct formula? Advantage, another person can assist so that you can get more sleep. Other Resources include Early Childhood Centres, Community Nurse, Day Stay and Long Stay, Family Support Services, Play Groups, Community Mental Health Centre, Nursing Mothers Association (Local Groups). An update Since this booklet was originally written, the women involved in the working group have all made our choices. Ann and Meg decided not to have children. For both of us, our relationships with our partners and our work provided satisfaction and achievement and we didn’t want to risk more episodes of illness. Fran has a beautiful family and has inspired three other women from the group to go ahead and have a family. | |||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||