Cleft lip and/or palate (CL/P) are common birth defects affecting one to three of every 1,000 live births with wide variability in terms of geographic region and socioeconomic status (Chen, Hwang, & Guo, 2009; Hutchinson, Wellman, Noe, & Kahn, 2011; Liou et al., 2011). American Indians and Asians have relatively high incidence rates (3.6 and 1.5–2.0 per 1,000 births, respectively); African Americans have a relatively low incidence rate, at 0.5 per 1,000 births (Mossey, Little, Munger, Dixon, & Shaw, 2009). In Taiwan, incidence rates are 1.3–3.1 per 1,000 births for CL/P and 0.5 per 1,000 births for isolated cleft palate (Chen et al., 2009; Liou et al., 2011). These defects typically require surgical procedures after childbirth and can cause severe morbidity and complications (Skari et al., 2006).
Medical advances now permit detection of prenatal fetal abnormalities, including CL/P. In many advanced countries, obstetrical ultrasound examination is now a routine procedure for prenatal care (Askelsdóttir, Conroy, & Rempel, 2008; de Jong, Dondorp, Frints, de Die-Smulders, & de Wert, 2011; Gammeltoft & Nguyen, 2007; Milunsky, 2004). In Taiwan, National Health Insurance allows reimbursement for ultrasound examinations done in the 20th week of pregnancy, which permits early detection of CL/P. Some expecting mothers choose to abort fetuses with CL/P identified using prenatal diagnosis (Black, 2011; Carnevale, 2007; de Jong et al., 2011). In Taiwan, one report documented that, of 84 pregnant women who learned of their fetus’ CL/P, 17 (20%) chose to terminate (Liou et al., 2011). Ethical concerns have therefore been raised concerning prenatal CL/P diagnoses (Gammeltoft & Nguyen, 2007; Garcia et al., 2002; Leuzinger-Bohleber, 2011). In a study in Israel, 10 of 11 expecting mothers whose babies were diagnosed with CL/P decided to terminate (Bronshtein, Blumenfeld, & Blumenfeld, 1996); In the United Kingdom, only 2 of 23 expecting mothers whose babies were diagnosed with CL/P decided to terminate (Shaikh, Mercer, Sohan, Kyle, & Soothill, 2001). Under Taiwan’s Eugenic Health Care Regulations, artificial fetal abortion is legal before the 24th week of pregnancy under conditions of a congenital anomaly diagnosis (Department of Health, Executive Yuan, Taiwan, ROC, 2000). Pan and colleagues studied 49 expecting mothers of fetuses diagnosed with CL/P; 26 decided to terminate, resulting in a 53.1% abortion rate (Pan et al., 1998).
A prenatal malformation diagnosis may be associated with increased anxiety and stress in parents (Lalor, Devane, & Begley, 2007; Nusbaum et al., 2008). While early detection of anomalies may provide parents the opportunity to emotionally prepare themselves for birth and related issues, detection may also trigger a significant period of distress and decisional dilemma (Askelsdóttir et al., 2008). Several investigations have addressed the impacts of postnatal management (Feragen & Borge, 2010; Hedrick, 2005), the experience of raising children with CL/P (Hunfeld, Tempels, Passchier, Hazebroek, & Tibboel, 1999; Hutchinson et al., 2011; Kramer et al., 2009), and the psychological effects of choosing to terminate a pregnancy (Davalbhakta & Hall, 2000; Gammeltoft & Nguyen, 2007). However, little research in Taiwan has addressed the psychological impact on expecting mothers of choosing to continue their pregnancies. In this article, we designed a qualitative, face-to-face interview-based study to determine the psychological coping processes adopted by expecting mothers of ultrasound-diagnosed CL/P fetuses who chose to continue their pregnancies to term.
Purposive sampling was used to recruit expecting mothers of fetuses newly diagnosed with CL/P. Recruiting took place between May 2000 and March 2002 at a tertiary referral hospital in Taipei, Taiwan. Oral informed consent was obtained from participants within 1 week of diagnosis. Interviews were performed face to face, in a conversational style. Interviews were completed within 2 weeks of diagnosis.
Potential participants who decided to terminate their pregnancy were excluded from the study population. With permission from attending obstetricians, researchers queried pregnant women in the hospital waiting room about willingness to participate in a research project involving an audiotaped interview of their pregnancy experiences. Mothers were excluded from this study if (a) they had difficulties communicating in Mandarin or Taiwanese, (b) they had gestational diseases or pregnancy complications, (c) fetuses were diagnosed with other anomalies, or (d) the pregnancy was terminated. Six women met the inclusion criteria and consented to take part.
Data collection and analysis were performed in parallel. The first author conducted one to two interviews averaging 1–2 hours with each mother in a private room at the hospital. The sample size was determined using data saturation principles, that is, additional samples are recruited to a point at which no new information is obtained and redundancy is achieved (Ritchie & Lewis, 2003). The interview began with the questions: “Please tell me about your pregnancy experience?”; “How did you feel when you first learned your baby had problems?”; and “What about now?” The interviewer paid careful attention to participant responses to these first questions to foster positive rapport. The interviewer next asked, “How has the finding of the baby’s condition affected you and your family?” Later, the interviewer used the participant’s own ordering of ideas and phrasing to follow up on specific issues, such as, “What major factors affected your decision to continue the pregnancy?” and “How do you feel about family and friends’ reactions to the baby’s condition?” This approach allowed the interviewer to probe for further participant experience details. The interviewer worked to express empathy throughout the interview process without interference from her personal beliefs/suppositions. The interviewer offered to accompany the participant to scheduled checkups and offered to answer any participant questions during and after medical visits.
The first author transcribed interview tapes within 2 week of the interview session. We used a qualitative phenomenological approach for data collection and analysis (Giorgi, 1985, 2005). All statements related to psychological processes were extracted and translated from Chinese to English by the authors. A person familiar with both languages reviewed all translations. Translated statements were modified to reflect more colloquial English usage by the last author, who obtained her BS, Master, and PhD degrees in Australia.
Two investigators (Hsieh and Shiao) worked initially separately and then together to organize statements into clusters reflecting similar issues or experiences addressed by individual participants. Continued analysis and synthesis resulted in the clusters being grouped into five themes that encompassed the varied experiences expressed by the participants.
All information was given to interviewees in written and verbal formats before obtaining written informed consent. The study was reviewed and approved by the institutional review board at the National Taiwan University Medical College. Confidentiality was assured and secured by anonymously coding all data. Names and codes were kept separately. Participants were informed that they could refuse to answer any question and that they could terminate the interview at any time. There were no dependency relationships or conflicts of interests between the interviewer and interviewees.
A total of 16 expecting mothers were diagnosed as carrying a fetus with CL/P at the target hospital during the participant recruitment period. Ten chose to terminate their pregnancy and were excluded from participating. We invited the remaining six for in-depth interviews. Table 1 shows participant characteristics and gestation histories. Participant CL/P diagnoses were made during the 20th to 28th week of gestation. All women gave birth at gestational ages between 35 and 41 weeks.
Knowledge of fetus facial deformity resulted in impacts on participants that researchers summarized into five themes: (a) loss of self-value as a mother, (b) blaming the mother, (c) indecision about whether to continue the pregnancy, (d) anxiety triggered by insufficient information, and (e) burden of care and concerns about potential disadvantaged status.
Loss of Self-Value as a Mother
Having given birth to a “perfect” baby is a dream shared by many expecting mothers. While knowing the diagnosis, mothers often have the following reactions: feel threatened by baby’s health and predict the arrival of an unhealthy baby.
Participants expressed sorrow at the loss of their dream of having a perfect, healthy baby and a loss of self-value as a mother. The ability to give birth to a healthy fetus is commonly perceived as central to true womanhood and motherhood. Knowledge of her imperfect baby thus implied loss of self-value as a mother.
This is my first pregnancy and my first baby. I just hoped she would be healthy. I never would have imagined she might have CL/P. (Mother D)
Predicted/being unable to have a healthy baby
All expecting mothers reported going to routine ultrasound examinations in a pleasant mood. However, once participants received news of suspected fetal abnormality, they were forced to deal with a pregnancy that fell short of their dreams and hopes.
The doctor told me she had CL/P. It was a terrible shock. (Mother F)
It is impossible for me to show the video of the delivery to friends or family because my child was abnormal. (Mother B)
Blaming the Mother
Almost all mothers being interviewed in our study expressed the similar feeling: blaming oneself for being unable to give birth to a healthy baby. For some, it is even more painful if the blame also comes from the husband or family.
Some participants believed they were the major cause of their fetus’ condition because of “misbehaviors” or as “punishment” for sins.
I blamed myself greatly…I thought my job was the cause. I had to take care of patients in nuclear medicine who had some radioactive medicines inside their bodies. I kept asking myself: “What have I done wrong?” (Mother A)
Our bookshelf came loose from the wall while I was pregnant. I told the carpenter to fix it using hammer and nails. It must have been my doing that caused her facial defect. (Mother D)
Blame from family/husband
Self-blame was often further aggravated by blame from family, especially from the husband. Participants also feared being asked about the cause of the condition.
When we found that our child had CL/P at week 20, my husband was very unhappy. He sarcastically blamed me and asked why I carried a monster. I said, “How could you call her a monster?” My husband said that she was simply a monster by nature. (Mother F)
My mother said that it must have been caused by my using scissors in the bedroom while pregnant. (Mother E)
My husband said that I should not have used scissors while pregnant…. (Mother C)
Indecision About Whether to Continue the Pregnancy
One dilemma faced by all mothers in our study was, “Should I keep the baby?” This is a rather complicated process and involves some considerations such as mother’s bonding with the fetus versus termination and family opinions versus those of the mother.
Bonding with the fetus versus termination
Domestic eugenic healthcare regulations forbid the unnatural termination of pregnancies after the 25th week (Department of Health, Executive Yuan, Taiwan, ROC, 2000). Four of the fetuses were diagnosed as having CL/P during the 24th week of gestation. They faced a great dilemma when deciding whether or not to keep the baby. In some expecting mothers, bonding with the fetus had already been developed before the diagnosis. Thus, expecting mothers struggled greatly about whether to terminate.
I found out that she had this problem at the 5th month of pregnancy. She started moving inside me. I thought about aborting her. However, whenever this idea came to my mind, I felt terrible. Whenever she moved inside me, I felt so sad that she had this problem. My thoughts of aborting her made me feel guilty. (Mother F)
Family opinions versus those of the mother
In addition to her own struggle, the expecting mothers had to deal with the opinions of their husband and other family members. Family members could influence the decision significantly. Some found family members’ lobbying to terminate the pregnancy difficult to handle.
After knowing her condition, my husband told me to abort her. I cried a lot. I felt so bad that her father did not want her even before birth. How could he tell me to do this (Mother D)?
After knowing his problem, I started crying because I was afraid that he may have other health problems, such as heart or brain problems. I was also nervous because I feared that they (the family) would have me terminate the pregnancy. (Mother B)
However, some family members supported the idea of keeping the baby, which comforted the participant greatly.
I thought of terminating the pregnancy, but my father said that she was still a life and did not agree with termination. (Mother F)
The fetus’ will to live/not be seen earlier
The mothers of the two babies who received their ultrasonographic diagnosis after 24 weeks of gestation experienced less decision-related suffering.
The baby with CL/P may not have wanted to be seen. When she had the ultrasound, she did not want to let us see her, like this (the mother placed her hand in front of her mouth). Sometimes she faced down to avoid the ultrasound. She seemed to know her own problem and did not want us to see her. She is clever. She hid her face until after 24 weeks. Only then did we see it. She must have said, “Now you know, what are you going to do to me?” (the mother was crying as she spoke). (Mother D)
Anxiety Triggered by Insufficient Information
Some expecting mothers expressed that they were feeling anxious of the unknown conditions of the baby as they were not given enough information from health professionals. There are three concerns under this theme: unsure of the baby’s health conditions and not clear about what CL/P is, concerns about the baby’s appearance and self-esteem in later life, and unsure of the severity of CL/P complications after birth.
Unsure of the baby’s health conditions/what CL/P is
When receiving the initial CL/P diagnosis from their obstetrician, participants had uncertainties regarding their baby’s health and social challenges. Uncertainties were caused by incomplete doctor explanations, likely caused by doctor inexperience with/lack of training on CL/P issues. Most participants did not fully understand CL/P or its potential consequences. Participants had difficulty finding relevant information on the condition, which added to their anxiety, uncertainty, and fear.
While my husband and I were told by the doctor about this condition, we were not sure what that condition truly was. We sought information from the hospital but were totally lost and did not know where to start (Mother D).
I was afraid that I was treating the condition too simply, that the true health problem might actually more serious than just CL/P (Mother A).
In addition, mothers usually had strong fears of facing the baby’s immediate appearance at delivery.
I am so afraid of looking her in the face for the first time. Previously we all saw her by ultrasound. I still keep the ultrasound figures with me (the mother showed them to the interviewer). What would it be like when she’s right there in front of me? I was not clearly informed by the doctor. I was confused at that time. I was so fearful…. (Mother F)
Participants also had concerns about potential problems related to their children’s intelligence and development.
Could this condition affect intelligence? (Mother D)
I wished my child to be healthy with all his mental faculties intact. If he was mentally impaired, it would be tough for me to teach him. (Mother B)
Concerns about the baby’s appearance and self-esteem in later life
All participants worried that their child would have difficulty accepting his or her own appearance. Some worried about their child’s future self-esteem and self-image. They were concerned that the child would ask about his or her appearance and that explaining the cause of the facial condition would be difficult.
Would he value himself less because of his appearance? I am worried that he would feel inferior in front of others. (Mother A)
I am worried that other kids would laugh at him or bully him because of his appearance. (Mother C)
While she was at home, we could take good care of her. However, in the future she would have to go out, and we could not take care of her anymore. I am so worried about what she might encounter when she goes out. (Mother D)
While he was little, it might be okay. However, as he grows up, schoolmates might discover his lack of teeth and laugh at him. (Mother E)
Participants also worried that family members would not accept a child with CL/P and that their child’s appearance would complicate interactions with peers.
My mother-in-law still could not accept the baby’s cleft lip and cleft palate. My husband had told her, but she kept asking why this happened. It could be that none around her had such a problem. Thus, she had difficulty accepting it. (Mother D)
I was worried that our relatives would see her and see the problems with her mouth. Some would not mention it, but keep their opinions to themselves. Others would ask directly and even stare in a rather strange manner. (Mother F)
Unsure of the severity of CL/P complicationsafter birth
Their baby’s ability to eat normally and communicate effectively in the future were main concerns of several participants. They were especially concerned about feeding. This was the source of significant anxiety.
I thought that when he was born, he would have problems eating. Therefore, I ate more before giving birth to give him better nutrition. The burden of eating would be less when he was on his own. (Mother C)
With this problem, how could she suck milk? Would the milk leak out of her mouth after sucking? (Mother D)
Burden of Care and Concerns About Potential Disadvantaged Status
The burden of care for the baby and the uncertain outcome of the surgery also worry the mothers who decided to continue the pregnancy. Two subthemes will explain their worries as burden of care for the baby and uncertainty about the outcome of corrective surgery to their unborn baby.
Burden of care for the baby
This theme focuses concern on the future of the baby and family. For example, burden of care was expected to be greater than for average babies. Babies were also expected to be disadvantaged. Before delivery, none of the expecting mothers were sure they would be competent as a mother.
We thought maybe we should leave the baby in the hospital to be taken care of by professionals. No one in the family was certain about how to take care of this kind of child. I had never taken care of this kind of baby before. The healthcare workers must know better. I really did not know how. (Mother C)
I wished that he would stay inside me forever. I could touch him anytime. I could take him everywhere I went. (Interviewer: “You can take him everywhere even after he is born.”) The feelings weren’t the same as when he was inside me, and when I held him in my arms. (Interviewer: “What were the differences?”) When he was inside me, he ate everything I ate and went everywhere I went, I was free to do anything (Mother E).
The mothers and families also faced the burden of surgery, including related trauma and added financial responsibilities. The financial burden was particularly heavy for single-income families.
How much would it cost for corrective surgery for his condition? Was this covered by the National Health Insurance? (Mother A)
Now only my husband earned an income. We already had two children—and now him. He had many problems (sigh). We were not sure how much it would cost us for him to complete the surgery. (Mother C)
Uncertainty about the outcome of corrective surgery
Participants were also uncertain about the outcome of corrective procedures and concerned about the recovery and complications.
I was worried about her vocal cords. Maybe she would have voice problems and have problems speaking and communicating. Would other people consider her weird when she had difficult talking? (Mother F)
In summary, most concerns were associated with (a) family member reactions to the baby, babies being unable to establish close relationships with the family, and the potential for mental/psychological problems; (b) family finances, especially related to the medical cost of corrective surgical procedures; and (c) social acclimation issues for the child, including potential discrimination, poor acceptance by peers, poor future career opportunities, difficulties finding a spouse, and the risk of passing CL/P risk on to future generations.
I am worried that my boy may pass this condition on to his children. (Mother E)
Maybe this condition is genetic? We are worried that in the future she will have problems finding a husband. (Mother F)
This is the first study to address the psychosocial factors affecting expecting mothers who receive a fetal diagnosis of cleft lip/palate. Despite the limited number of six eligible cases available for interview, participants provided adequate data to achieve saturation, giving researchers significant information regarding the psychological factors involved in deciding to keep a fetus after receiving a CL/P diagnosis. Impacts were complicated; the following five domains were identified by this study: (a) loss of self-value as a mother, (b) blaming the mother, (c) indecision about whether to continue the pregnancy, (d) anxiety triggered by insufficient information, and (e) burden of care and concerns about potential disadvantaged status.
Compared to a Swedish study on parents’ experiences with having a CL/P child (Johansson & Ringsberg, 2004), our study was conducted before childbirth. Thus, our study collects data at the critical time soon after expecting mothers receive the psychologically stressful news. This is a time when expecting mothers are still struggling to obtain medical information and advice, considering whether or not to keep the baby, and potentially facing ridicule from husband and family members. The Swedish study focused on parent experiences with having a CL/P child, their adaption process, feelings on their first encounter with their child, the support received from professionals, and reactions from family and others. Parents described perceiving shock at levels similar to our study. Swedish family and friends commented on the child either positively or neutrally. The latter reaction was perceived as lack of interest.
Participants in this study reported feeling emotional distress upon CL/P diagnosis, as their dream of having a perfect and healthy baby had ended and their self-value as a mother had been compromised. This was further enhanced by the blames from husband and family. These findings echoed those of Martin (2005). One study showed that women experienced greater psychological pain than men following a positive prenatal diagnosis of fetal impairment (Sandelowski & Barroso, 2005). One of the husbands in this study went so far as to call his child a monster and blame the condition on the expectant mother.
Prenatal testing has become increasingly routine over the past three decades (Milunsky, 2004). After a positive prenatal fetal impairment diagnosis, couples are faced with a series of nested and time-sensitive decisions such as whether to continue pregnancy (Sandelowski & Barroso, 2005). Decisions are made more problematic and troubling because of a general lack of objective information. Nonetheless, a small Dutch study suggested that parents with prenatal foreknowledge of malformation experience increased parental burden and grief compared to those without such knowledge (Hunfeld et al., 1999). In addition, mothers typically have greater psychological bonding to the unborn fetus than the father. Our study identified one expectant mother who had actively and successfully resisted her husband’s wish to abort the fetus.
It is illegal in Taiwan to terminate a pregnancy after the 24th week of gestation. Artificial abortion is thus not an option for pregnancies with left lip/palates identified during the 25th week or later. Fetal movement was found to significantly enhance mother–fetus bonding and add to the difficulties in making a decision to terminate. Another factor found to influence the abortion decision was the presence of concomitant medical issues. Other health issues noted by the obstetrician tended to make a decision to terminate easier and less troublesome for parents. Religion was another important factor of influence. Christianity, for example, prohibits artificial termination of pregnancy. Past studies have shown religious beliefs to affect attitudes toward therapies used to treat congenital anomalies and genetic disorders (Strauss et al., 2007). Gender of the fetus may also impact the decision to abort or continue a pregnancy. Parents have previously expressed greater concern over the facial appearance of female than male babies (Broder, Smith, & Strauss, 1992).
In this study, issues of primary concern to participants included physical appearance, mental problems, social disadvantages, difficulties in finding a spouse, and the risk of passing cleft lip/palate tendencies to future generations. The study on Sweden parent experiences with CL/P children (Johansson & Ringsberg, 2004) found that parents reported visible facial scarring as an issue of concern, particularly for girls. Most parents also expressed anxiety about possible speech problems. As children with orofacial clefts are often stigmatized because of appearance (cleft lip), speech (cleft palate), or both, they may be at higher risk of altered socioemotional functions during early childhood (Broder et al., 1992). It is understandable that expecting mothers are concerned about the health and social disadvantages of their baby and about potential language disadvantages (Johansson & Ringsberg, 2004).
One study showed parents who received a prenatal congenital malformation diagnosis suffered greater postchildbirth psychological distress than parents whose children were diagnosed with such after delivery (Skari et al., 2006). It is likely that the development of children born with congenital malformations may be similarly affected.
While mothers continue to worry about their children after childbirth, their worry is likely less severe than before childbirth. Feelings of depreciated self-value also likely diminish after childbirth. The dilemma about whether or not to keep the child is no longer a relevant concern. Worries about physical appearance are tied to the success of corrective surgery, although mothers continue to worry about their child being disadvantaged in social relationships.
Continued improvements in antenatal diagnosis methods will allow continued improvements in CL/P prenatal diagnoses. CL/P is one of many minor anomalies for which postnatal medical/surgical management can allow sufferers to maintain relatively normal lives. However, some expecting parents consider the condition serious enough to consider terminating the pregnancy prior to term. This study provided insights into the psychological effects of a CL/P diagnosis on expecting mothers who had decided to continue their pregnancy to term. Findings add to the body of knowledge related to expecting mothers with abnormal pregnancies. Findings also clearly demonstrate the importance of healthcare professionals exploring systematically the psychological impacts of using advanced antenatal diagnostic technologies. Increased evidence-based understanding is essential to promoting the physical health of the neonate and emotional wellbeing of his or her parents.
This is the first study to conduct a qualitative assessment of the psychological impact on expecting mothers of receiving a fetal CL/P diagnosis. Despite the small sample size, we adequately identified the principal psychological impacts. Quantitative investigation into the relative importance of these impacts on expecting mothers’ decisions to continue their pregnancy is warranted. We hope the findings of this study help better inform healthcare providers who handle such cases and assist expecting mothers to better handle the emotional issues related to whether or not to continue a CL/P pregnancy to term.
The findings of this study cannot be generalized as the experiences of the majority of expecting mothers carrying a fetus with CL/P in Taiwan because of its small number of cases.
The authors would like to thank the mothers who participated in this study for their precious time and honesty. We also thank Mr. Alex Guo for his proofreading assistance.
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