Monday, November 28, 2011

CF, Children, Adoption... Oh My!

As a CF'er who is married and has been contemplating raising children with my spouse I know exactly how it feels to be judged on whether we are fit to parent based on health. However, I seem to have a lot of "conditions" for parents with CF. Things like, what's their individual prognosis, are they pre or post transplant, how stable is the marital relationship, what's their financial situation, etc...etc...etc.. Maybe this stems from working with adoptive parents and knowing what scrutiny they go thru and thinking that maybe those with terminal diseases should go thru the same sort of thought process. But then when I take a step back to really think the issue thru I become appalled to think that my God given right to parent/mother is with conditions of my physical being rather than on my ability to love, nurture, discipline, tend to and teach.

There is much debate in the CF realm about whether a CF'er should raise children regardless of how they enter a family. To be completely honest, I have questioned this myself. Particularly with adoption. An adopted child has already experienced so much loss in their small lifetime that subjecting them to the possibility, a high possibility I might add, that they'll experience another devastating loss is very unsettling to me. With a biological child the loss is still just as devastating but without all the background baggage/loss. This compounded with things like, is the CF'er married or are they single and attempting to raise a child alone and battle CF, what type of support system do they have in place.

There is little to no information out there about having CF and having children. I mean z.e.r.o. I feel like those who have braved the storm have so much to teach those of us who really need some answers or at least a road map of sorts on how to find information.

How does one decide? What if we choose adoption and are never chosen or are declined due to my health. What if we become pregnant and shortly after I pass away leaving my husband devastated by loss with a new baby to raise? What if... what if....

Is anyone guaranteed a specific amount of time?

Normally, I would brush of all the 'what if'ing' and make my decision but this decision is huge. It affects not just two adults who can rationalize but also a potential child. A innocent child, who had no choice in the matter.

B and I said we would give it 5 years of marriage before we really thought about children. We are here as of Sept. 3rd. We are talking and the more we bring to the table the less we have answers for.  Quite frankly, I don't know if we had all the answers that making this sort of decision would be easy because of how much unkown is really there. We'll never know the exact day/time of my passing until it happens, we don't know if a cure will be found in my lifetime, we don't know what medical advancements will come about that could make CF equivalent to asthma. The list goes on and on.......

We want to make a decision that is based on the most current information we possibly can and to fully be at peace with our decision. We are having genetic testing done to fully understand that aspect. I have done a few medical tests to understand how my body would handle pregnancy. Should we decided to forgo attempting to have children biologically we have found that domestic adoption is really our only route due all the requirement of international adoption and medical. Which doesn't turn us off to adoption in the least but places an aspect I am not familiar with which brings feelings of fear, having a birth mother pick which family their child goes to is really hard for me to swallow, it terrifies me that they might look over us because of the CF (after we have paid thousands).

Or, do we pray for peace in knowing that the two of us is enough.

Any insight is welcomed, whether you have CF or not. 

4 comments:

  1. I commented to your question on CL, so I won't repeat that, but I did have a question. I read that you had medical testing to see how your body would handle a pregnancy - what kind of testing did you have done? That sounds really interesting and I'd love to look into that for myself. Thanks - Colleen.

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  2. man that is tough. I have been taught that all women who have the desire will be mothers. If their bodies or circumstances prevent that from happening in this short life, we have eternities to progress in families. You will be a mother, Kari. So even if that prayer is answered with that peace that two is enough, I truly believe with all my heart that God will give a little PS. "for now." Sending love.

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  3. Colleen- One of the biggest tests I had done besides blood work to evaulate my vitamin levels was an EKG. Many people with chronic lung disease can put stress on the heart and the doctors wanted to ensure that my heart was healthy and stable. The other big thing we did was look at all my medications and figure out which ones would be dangerous to the baby and what alternatives could be used during that 9 months. If no alternatives were available then looking at how I could prepare my body before hand. This is alot to do just to "see" if pregnancy is an option we would still consider but I needed to know.

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  4. Oh my did I relate with your thoughts and questions in your post. Those were my thought and questions about 6-7 years ago. Each person’s health and life circumstance is different but I can share a little of went into our decision making process. We both had the desire to be parents but I, in particular, worried about leaving behind precious children at a young age. At the time we also didn’t know if my husband was a CF carrier which if he was could have meant a child with CF. I really struggled with that since I knew firsthand what that meant and didn’t want my child to have to deal with that. We eventually came to the decision that no one knows how long they are given on this earth and that we would pursue having children if God allowed that to happen. My husband did get tested and was found to NOT be a carrier so we knew that our children would be carriers but would not have CF. After 2 years of trying we got pregnant with our son. I had the EKG done, reviewed medications with the CF team, started seeing a perinatologist and had frequent ultrasounds and appointments. My pregnancy with him went surprisingly smoothly. The only thing I struggled with was gaining weight. By the time he was born, I had gained a total of 15 pounds. Not great but not terrible either. I was even able to nurse him until he turned 1 year old. During pregnancy and nursing I had to work extra hard at consuming the needed extra calories but overall both he and I did well.

    3 years later, I got pregnant with our daughter. I think we all expected the 2nd pregnancy to go pretty much like the first one. I saw the same perinatologist again and followed the same pattern for care. With her pregnancy though, I had quite a bit of nauseousness and a REALLY hard time gaining weight. By the time she was born, I had only gained 6 pounds. She was a healthy baby but I ended up in the hospital a little less than 2 months later for 9 days very malnourished. I had been nursing her up to that point but had to stop. It broke my heart to not be able to continue nursing but it was definitely necessary for my health at that point. She was getting all the good stuff and there was nothing left for my body. It took a few months with lots of prayers, eating, and more eating but I was able to get back to a good weight again.

    Although some might say that pregnancy was hard on my body and I shouldn’t have risked it, my kids are the ones that are my biggest motivation to continue doing the things I need to do to stay healthy. Yes, it can wear your body down to get up for those middle of the night feedings and dealing with the constant demands of a newborn or toddler. Yes, it can be very emotional sometimes thinking about the possibility that I might not get to be around for all the milestones in their life. But, I am so thankful for the chance to be their mom and experience the joy of raising my beautiful children. They are now 5 and 2 years old and I have no regrets.

    I will be praying for you and your husband as you decide what you are going to do. I know how hard that decision is! Hugs and Prayers!

    Keri F.

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