Pregnancy after Solid Organ Transplantation

Purpose:

Many women, once their quality of life improves with transplantation, consider pregnancy as an option. Several researchers reported positive and negative physiological outcomes of those pregnancies while woman have been maintained on numerous medications including immunosuppressive agents. Many couples struggle with the decision to become pregnant. Transplant teams want to work with couples to help them make decisions that improve their quality of life but does not place the transplanted organ at risk for injury. The problem is that  little information is known about how post-transplant couples make their personal pregnancy decision. The purpose of the study was to explore the reproductive decision-making process with female organ transplant recipients (renal, lung, heart & liver transplants).

 Methods:

Design was mixed methods using taped telephone interviews and written surveys. Ground theory guided the design and analysis. All telephone interviews started with a reminder that it was being taped and the opening statement, “Tell me about yourself and your transplant.” Subsequent questions followed the natural flow of the conversation.  A typist transcribed responses exactly as they were spoken. Each interview was completed in 25 to 35 minutes. Participants received a $25 gift certificate after the interview was completed and after completed surveys were returned. Surveys were the MOS Social Support Survey and the SF-36 Health Survey. Sample included were 11 participants with 1 lung recipient, 1 liver recipient, 1 heart recipient, and 8 renal recipients. Responses, typed verbatim, were analyzed through the constant comparative method using open, axial, and selective coding. Since social support is critical, there was a search for disconfirming evidence using the surveys and interviews. Trustworthiness was established through prolonged engagement, triangulation of data methods, and thick descriptions.

Results:

Only 2 women had an unplanned pregnancy and they made the conscious decision to continue the pregnancy. The remaining 10 women planned conception with their transplant teams, making pharmacological changes, Some interviewed obstetricians in order to find one who would support their decision and provide care if a pregnancy occurred. The core theme was “Wanting a child”. These women wanted a child and were willing to take reasonable risks to achieve that goal. There were 8 themes that emerged from the data. These were 1) getting information, 2) dealing with problems (before, during and after pregnancy), 3) preparing for pregnancy and life after pregnancy, 4) talking to each other (transplant team & OB team, partner, family, organ donor), 5) supporting (or not supporting) pregnancy decisions, 6) coping, 7) advocating for pregnancy, and  8) advising others. Social support scores tended to be high and match statements about support in the interviews. The one participant who had the lower score was seeing a therapist to deal with depression. She had moved to the US from South America several years ago and was “still adjusting”. Most participants rated their heath as good to very good.

Conclusion:

Many health care professions shared inaccurate information about pregnancy after solid organ transplantation. These women often had to advocate for their pregnancies and provide accurate information to their health care teams. They provided the articles from the pregnancy registries and internet. This was a select group who was focused on their pregnancy goal and they with their partners carefully analyzed the available information as they made their reproduction decisions. They all stated that they had no other transplant recipients to share their experiences and they felt that was a void in their life. Most stated that they had support for their pregnancy decision but they also shared that they avoided others who expressed any hint of disapproval. For one woman that included her sister who donated the transplanted kidney.  When asked for suggested advice that should be given to others in a similar situation, many responded in the same way.

• Make sure your partner agrees with the decision.
• Work to coordinate between health care team members “to really like just have everyone on the same page”. 
• Consult your health care team with all decisions or concerns.
• “Always be aware of what is going on with your body and don’t miss taking your medications.”
• Find an experienced medical team, i.e., one who works with high risk pregnancies and transplant patients.
• Establish a support system for yourself
• Plan for life after pregnancy.

 Some women talked about the possibility of their death during the pregnancy or during their child’s young life. They demonstrated an excellent understanding of the risks of their decisions. One person stated: “ …it’s by far the most amazing, incredible, I guess exceeded almost every expectation I could have ever imagined to be a parent.  And I am so grateful that I didn’t pass on my chance to have this.”   

Each participant stated that she made the right decision for herself but recognized that not all female transplant recipients should made a similar personal decision. They also agreed that it was a complex decision. Health care teams need to have the most accurate information to assist women to make appropriate decisions related to pregnancy or have resources (support groups, web sites, etc.) that these women can use .

Future researchers should interview women who made the decision not to pursue pregnancy but chose to adopt or to remain childless in order to explore their quality of life and life satisfaction. Partners should be included so their voice is also heard and compare the decision-making process with their spouse.