Cystic fibrosis, infertility and the desire for motherhood: a funny recipe

Interview with Charlène Blais

Charlène Blais was diagnosed with cystic fibrosis at the age of 13. However, she assures that this news did not prevent her from moving forward with a full commitment to life. Charlène goes through the ups and downs of her daily life with passion and rigor. Urged by the dream of having four children, two boys and two girls, she must resort to five artificial inseminations and three in vitro fertilization to finally be rewarded. The culmination of a process that lasted seven years finally came on April 13, 2015, when she was told that she was pregnant.

Despite the wonder and the great happiness that her twins bring her, Charlène is still in a position to realize that her dream was perhaps a bit unrealistic, due to the difficulty of the procedures and the energy that must be devoted to them. She and her husband then decided to turn to adoption in Quebec more specifically. She gave us an interview where we will explore the different ways to have children when a woman has cystic fibrosis. In particular, we will pay particular attention to the
adoption approach that she has also recently experimented with.

Interview with Charlène Blais who, for over three years, has also been the president of Vivre avec la
cystic fibrosis.

How did cystic fibrosis complicate your dream of being pregnant?

For women, there are no clear studies or scientific data that really explains how cystic fibrosis complicates the process of having children. Doctors will often tell us that there is more mucus in the cervix, which creates a small physical barrier in the cervix that prevents sperm from entering.

For men who have cystic fibrosis, it's quite simple: the vas deferens that brings sperm from the testicles to the outside is often completely blocked by mucus. Approximately 95% of men who have cystic fibrosis are therefore infertile. They must use in vitro fertilization when they want to be linked to the child genetically.

So, what means are available to women in your condition if they really want to get pregnant despite failed attempts?

First of all, there is artificial insemination. Doctors take sperm and when they recognize an ovulation range, they will simply carry the sperm into the cervix. We then try to jump the barrier at the beginning occupied by the
mucous plug caused by cystic fibrosis.

In vitro fertilization is a more intrusive procedure. It's still ovarian stimulation, but what we really want is to have as many mature eggs as possible. An attempt is made to fetch all the eggs with a syringe directly from the ovaries before ovulation occurs.

Then, in the laboratory, they try to make “matches.” They pierce the egg a little in order to introduce the sperm, which allows them to watch the embryos develop in a test tube. The evolution of embryos is characterized by specific stages; an embryo on day 3 must have 6 to 7 cells in memory. If it does not meet this request, it is either rejected or kept to see if the development would not be corrected in the coming days. In my case, at
3rd day an embryo had developed very well.

Since cystic fibrosis affects your daily life, how was the disease an additional challenge during your pregnancy?

I was able to continue to receive my “clapping” and to do all my treatments, but what was difficult was not being able to move as much because it was a risky pregnancy and because I was huge. Because of my inability to move physically, my secretions stuck more in my lungs and I had to have allies to get them out, so I needed an intravenous antibiotic.

Why did they finally turn to adoption?

We started to think about adoption between our second and third in vitro fertilization attempts. I said to myself: before turning to donors, I wanted to know how the process works? I didn't want to accept that motherhood had to happen through pregnancy. For me, being a parent was much more than that, it was supporting a child through all stages of his life even if he did not come from my womb or my genes. Not having a genetic affiliation was not an obstacle for us.

It seems that naturally we are turning to international adoption because we hear a lot about it and the process seems simple. In fact, if your application is selected, you can adopt your child as soon as you start the process but the rest can be long and difficult (multiple tests, meetings, possible problems in the chosen country, etc...).

What prompted you to adopt in Quebec instead of going international?

While the possibility of adopting in China, for example, was more likely, the process was much longer. Four years ago, I heard at an information session that the wait to adopt in China was 8 years. Today someone would do the same research and probably get different results. Because of the wait, this process did not suit me because my condition can deteriorate quickly. I don't know how I'm going to be in 8 years, so for me, this delay was unacceptable.

I then turned to adoption in Quebec, because the deadlines were more suited to my immediate desire to have children and start a family. I had read and understood that the deadlines were much shorter, but I had also heard a few horror stories about adoption through a foster family. In fact, it is possible to be a foster family at the beginning and, if the biological parent is not recognized as capable of taking care of their child, the possibility of adopting opens up to the foster family. Turning to this mixed banking program was the best option for us. If I can be in this child's life for a year or two, I will have brought something to him. Adoption was ideal, but we understood that that was not necessarily the purpose of this process.

Can you describe to us what the two adoption systems consist of in Quebec?

In Quebec, there are two distinct systems: regular adoption and “mixed” bank adoption. It's important to know that the big difference between the two is parental consent.

In the regular adoption process, biological parents must consent to the adoption at birth. They agree to give their child up for adoption by relinquishing all parental rights and signing all documents. The adopting parent can then welcome the child from the start and give them their own last name. He is recognized as the adoptive parent. On the other hand, the delays are very long, because women who carry a pregnancy to term in order not to be the parent are rare today. This situation was very different in Quebec about 50 years ago.

Then, there is the possibility of being a foster family at the mixed bank in order to adopt the foster children later. Social workers assess your ability to care for a child, while also assessing your level of tolerance for the risk of the child returning to their biological family. Some children are taken away from their biological parents against the will, that is, these parents do not consent to adoption. In these cases, it is the DPJ that decides. When the DPJ deems the biological parent unfit to take care of the child, the courts remove the child from the biological parents for a fixed period of time. The court therefore asks the biological parent to get back on their feet and meet certain criteria in order to be able to regain custody of their child. During this time, the child is part of the mixed bank and the family who takes care of the child acts as a foster family.

Second, if a parent is not in a position to meet the criteria set out, he will not be able to take care of his child. The latter will then be given to a family on the waiting list who did not want a foster child to be taken over by their biological parent after a certain period of time. The DPJ calls this situation risk management and I was in this situation. In this situation, I should have been able to expect a bit longer delays and for the child not to be as young and so on. This also implies that you must be in a position to support this child through the problems that will be related to the condition of the biological parent.

Can you briefly describe to me the different steps that are part of the adoption process via mixed banking?

First of all, you must attend an information session that is being held in your region. There are two per year, so you have to register and be patient. In my case I went there before starting the adoption process, then I really found it healthy to have this distance from the process. This period of time allowed us to reflect on our boundaries and to learn about what it is like to adopt a child. In the child's life, several situations can be problematic, such as shortcomings, broken hopes, and parents also face similar questions during the child's growth. The latter necessarily takes place differently than in the case of a biological child.

After this information session, which helps raise awareness, they give us a form with several questions related to our contact details, jobs, family and criteria. Once this form is sent to the DPJ, a person assesses our file and contacts us for an initial pre-selection meeting. This is a first meeting to discuss, they want to see where we are in our thinking. Are we ready to continue the process or, on the contrary, do we need to rethink certain aspects? This is where this person will guide us and tell us if we can start the assessment.

The assessment meetings phase follows. There is a couple assessment, an individual assessment, a home safety assessment, and an evaluation of your biological children. Finally, there is a second couple evaluation. At the end of this process, they meet with a committee to discuss the request. The time has come for the person who did the evaluations to submit their findings; this committee must decide whether the family should be accredited or not.

How can cystic fibrosis influence this adoption process? Can it complicate things?

Yes, it is an additional difficulty to adopt when you have a chronic illness. When they gave me a medical form to fill out, I didn't hide anything about my health condition. The social worker herself contacted my doctor to find out what was going on. In fact, they want to know if the person can raise a child to the age of majority without dying and without major health problems. In my case, my doctor was able to tell him that for my part there was nothing to suggest that my health condition would worsen in the medium or long term.

Another fairly important aspect is that it is possible to apply for adoption as a single person as if something happened to me and my husband wants to adopt the child, does he have the health to do so? Would he pass the evaluation grid anyway? This is the importance of being a solid couple, adoption must be a project taken to heart by both parents. You have to know how to rely on the other person who can be a bit fitter and make sure to go in the same direction.

What's next for you?

I am really happy: my daughter recently turned one year old and the first step towards adoption has been taken. It is the application for eligibility for adoption by which the judge gives the child the opportunity to be adopted while at the same time recognizing that the biological parents will not be present figures. They have just confirmed that I will soon be able to adopt my daughter!

In Quebec, biological parents still have three months to challenge this court decision. If there is no dispute, after three months, the adoption request can be made. I think
that within a year our daughter will bear our name. In our case, the process went very well, so much so that we are thinking about taking new steps to adopt another child with this process.

Final word

If someone in Quebec wants to become a parent without going through pregnancy, I think adoption is really a great option, it's a great process that respects our personal boundaries. We are rigorously evaluated to see if we are good candidates, because we must be fully aware of what this requires in terms of implications. Having children is true that it is a gift of self, I don't have much time for myself anymore. When I have free time, I prioritize my treatments and my health to be present with my children. Parenting is very demanding, but it really is the most beautiful thing in the world.

Comments collected by Emile of Guise

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