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Newsletters: Parenthood and TPN
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Parenthood and TPN

Liz Tucker, HPN Consumer and Parent

Over the last six months or so, we have had several requests from young women on TPN with questions about pregnancy, parenting and TPN. This article is a compilation of the questions, concerns andexperiences of the following TPN consumers: Bettemarie Bond, Dannene Bone, Malisa Matheny, Sally Moore, Candace Verners, David Young and myself. Obviously we won’t have all the potential questions and answers, but we hope we will give you something to think about.

 

Start Thinking Ahead

Everyone agreed that parenting is not a decision to be made lightly or quickly. Give yourself plenty of time to make your decisions. There is a great deal to think about. One of the first questions is whether you can carry the baby yourself. TPN should not, in and of itself, be a barrier. The medications you take for your underlying condition, however, could be a problem. This is one of those very important questions for your doctor. It may be possible to change to another medication, lower the dose or even go off the medication during the pregnancy/nursing period.

Similarly your underlying disease or energy level may present a significant obstacle. One participant spent the entire nine months she was pregnant with nausea and abdominal pain and it didn’t go away until right after her baby was born. One of the others, not only didn’t have any nausea; she actually felt her underlying disease was much better while she was pregnant. Another of our participants talked about how helpful her homecare company was during her pregnancy. They worked closely with the doctor to make sure both she and the baby were getting enough nutrition. The result was a healthy baby. As with a person who is not on TPN, everyone’s pregnancy experience can be different.

Another consideration if you want to carry the baby yourself, is whether your underlying diagnosis is hereditary. This has been a very difficult issue for some patients and their families. Genetic counseling should be done before you make any decisions. One of our participant’s and her husband believe that is a good idea and are already working with a geneticist to determine any possible impact should they decide to try pregnancy.

What are the chances that your disease or being on TPN will affect the pregnancy or your long-term life expectancy? If the answer is significant, you need to face the possibility of losing the baby or, after the baby’s birth, the baby losing you. Because she had lost a child due to her underlying condition, one participant gave up on ever having any children. At age 44 she became pregnant and one of her concerns was how would it affect her child if she were to die before she became an adult. After very serious thought she decided she would just be the best mother she could be and if something unforeseen happened she would have faith that her child would be okay with one parent. After all, there have been many children in this world who have lost a parent and grown up to be healthy, happy and productive human beings.

 

Other Options

If you are not able to carry your own pregnancy to term, or have a hereditary disease, surrogate birth mothers, adoption and foster care are options, though they each come with a different set of issues.

 

Surrogate Mother

Do you have a person you know and trust to be a surrogate birth mother for you? One of our participants has a sister who has offered to carry the baby. Other people have needed to go outside of their families. There are hefty financial costs to consider as well: fertility treatments, harvesting of your eggs, invitro-fertilization, implantation of the eggs and medical care for the surrogate mother, to name a few. Don’t forget the physical considerations of these actions as well. They can be very taxing on the body. Finally, there are significant legal and psychological issues regarding having someone else carry your child that should be looked into and dealt with before you start the process. In addition to your physician and family support, you will likely need to retain a lawyer and possibly a counselor as well.

 

Adoption

Adoption gets around many of the physical obstacles; however, with the exception of minority and disabled children, adoption in the US can be a long and expensive process. There just are not enough healthy babies to go around. Because of that, many couples have looked to countries in Eastern Europe, the Far East or Africa for babies to adopt. There can be many regulations and a significant amount of money involved to adopt children from these areas. In addition, in some cases parents have adopted supposedly healthy children only to bring them home and find they have very serious health issues. Can your support system handle a second chronically ill person?

 

Foster Parent

Becoming a foster parent also gets around the physical issues associated with pregnancy, but comes with other risks. Because many children in the foster care system come from problem or dysfunctional homes, being mentally and physically equipped to care for one of these children is essential. You also have to be prepared to give the child back to their biological family if there is a positive change in their home situation. One of our participants is looking at the possibility of taking on a school-age foster child to overcome the energy issues of pregnancy and caring for a small child, as well as the expense of all-day childcare (she works). She will still need a solid support system for those times when the child may be ill, she may be ill or hospitalized or, as a single parent, those times when she feels the total weight and responsibility for bringing this child up and needs a break.

 

Quality of Life

How might the pregnancy and then the baby affect your quality of life? Every parent involved with this article said that having children has enhanced their quality of life. They look forward to getting up every morning and watching their children grow.

Are they a great deal of work and consume a tremendous amount of energy? Of course. Are there future complications (fatigue, relapse of your disease, surgery, infections, obstructions, etc.) that might impact your ability to parent your child? Again, this is almost a certainty. It is apparent from all the stories gathered for this article that having a strong support team assembled is a must, but can help you realize your dream of having children. Being able to count on your husband, parents and/or siblings, in-laws or some of your friends is very important. The in-laws of one young woman have offered to add an addition to their home. It would be a place to stay when they need help with the baby. How much your support team can handle is a consideration too. The one father who helped with this article had undergone transplant surgery and was so looking forward to the time when he would be able to take some of the responsibility for their child off of his wife’s shoulders.

In summary, everyone who contributed towards this article expressed a similar sentiment though in a number of different ways. They all felt that having a child may not have cured their illness or allowed them to get off TPN, (and they still had problems occur because of those things), but participating in their children’s lives and watching them grow has only been a positive experience. As one parent said “It helps us see the world as something bigger than ourselves. We are not just our disease and not just a person on TPN. We are a parent, and being involved with our children means being involved in a larger world.”

As you can see, many of the questions and concerns are not that much different than the average person, there are just more of them for those of us on TPN. Addressing them ahead of time can keep the unpleasant surprises that come with pregnancy and parenthood to a minimum. We hope our experiences will help you if you are thinking about becoming a parent.

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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