3 February 2017

Nigeria: IVF Babies and the Stigma - Finding a Way Out

Photo: Lauren Everitt/AllAfrica
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Surprisingly, a group of parents who have benefitted from Assisted reproductive technology (ART) at various points in time have done something very rare. They have chose not to carry on with secrecy any more, like many have done. Rather, they have collectively agreed to break out of the cubicle by coming together to boldly talk about it openly without shame, so as to create awareness in the society, through an established organisation called, Fertility Awareness Advocate Initiative (FAAI), that IVF babies and their parents need not be stigmatised. This action, they say will help many out there who are also in need.

Would you rather remain childless in your entire life than have a child through a modern technology and be stigmatised by the society? Well, for many it's assumed they would rather have children of theirs through a contemporary means and be stigmatised than not having one at all. And that is where In-vitro fertilisation (IVF) and other options come in and then the accompanying stigmatisation by the society. Most parents who got their babies through Assisted Reproductive Technology (ART), which may be either through In-vitro fertilisation (IVF) or Intra uterine insemination (IUI), usually feel very reluctant to talk about it.

Even though IVF, process of fertilisation by manually combining an egg and sperm in a laboratory dish, and then transferring the embryo to the uterus, is growing fast in Nigeria, a lot of people who go through it do it with high level of secrecy. In a country like Nigeria one's inability to have a child is seen a social failure, especially for women and more so, it is like a taboo to disclose that your babies are IVF babies. They fear they would be stigmatised and their babies labeled unforeseen names. They also feel families and friends will look upon them as lacking in certain capability. And so they chose to keep mute about it even when they are aware that their outspokenness will help a lot of couples having fertility challenges but do not know how and where to get help.

Apparently, there are lots of women who need help but don't even know that they can get help. Some know but are afraid of the consequences and so really need a lot of knowledge and encouragement not just to take the decision but also to scale through the process achieving their dreams of having their own children through IVF or other means of ART. And so there arise the need for people who have had successful experiences with ART to come out to talk boldly about it and then encourage a lot of other people out there to come out and get help.

It would therefore be a pleasant surprise to many to know that Fertility Awareness Advocate Initiative (FAAI), a non-profit organisation that works to improve the lives of women and men experiencing fertility problems, is coming in to fill this gab.

FAAI, which started as an informal group of couples who had undergone successful IVF treatment at Nordica Fertility Centre, primarily focuses on providing support mechanism for people who are about to or already in the process of undergoing fertility treatment at Nordica.

The group recognises that considering the pressure most people face in deciding to undergo fertility treatment from religious, societal, and cultural perspectives, it was important to provide them with the right information about what the various treatments entail and possible result. Pregnancies resulting from IVF or other fertility treatments are like pregnancies from regular conception, so FAAI also provides a platform to celebrate with successful couples and hold the hands of unsuccessful ones. This set of people have come out boldly as a source of inspiration for many couples who have gone through periods of waiting to encourage them till they finally get a child/children of their own.

Speaking during its official launch in Lagos recently, FAAI President, Omoz Evborokhai, said, "Over time, we have discovered that there is ignorance in the populace as to IVF treatment options and as a result a number of couples grope in darkness and go through hell in seeking help. We at FAAI believe that people should get to know that there is hope at the end of the tunnel and that they can have babies through legitimate processes. By offering counseling support we let couples on the fertility journey know that others have gone through this same route and achieved successes. We also share our experiences, which goes a long way to inspire them."

Giving detailed explanation on what FAAI is all about, Evborokhai, noted, "We advice based on what we have experienced and not what we have read. So we are able to share our experiences with those who are also in the waiting room, so to speak, because we have been there and out of it."

FAAI president was quick to state that the group only offers emotional support and not financial for now, adding, "It is a non-governmental organisation and support group and we hold our meetings every last Sunday of the month. It is opened to those who are going through fertility treatment, those who have overcome the challenge and those who are in need. We preach about option available to couples and by that we create awareness and as much as possible, try to discuss treatment options while encouraging people to go for IVF as an alternative to buying babies at certain acclaimed babies factory. We have an MUO with Nordica Fertility Centre in which we have agreed jointly that we would fight the course."

Evborokhai feels strongly that stigmatisation about IVF babies should be a thing of the past. Talking about stigmatisation, we think that shouldn't be. I would rather have a child and be stigmatised than not have a child at all. If you laugh at me when I don't have a child, why laugh at me when I have one through an assisted reproduction technology? As long as it is a legitimate child, as long as the process of getting that child is legal, as long as I have not stolen a child, as long as I have not bought the child but I have only achieved pregnancy through an assisted technology, so why should I be ashamed? In fact, I should boast of my child because my child was achieved through a very expensive means. So my head should be high up and not bowed down."

He said therefore that stigmatisation should not arise in any way about one having babies through IVF. "We are proud of our babies because they are our bubbles of joy. They bring joy to us and complete our families and because we have achieved our pregnancies and babies through Nordica Fertility, Nordica is our first point of call if we must recommend anywhere for those in need."

"We want the world to know that it is nothing to be hidden when you achieve your children through IVF or other options. It is not anything inferior that should be hidden rather it is something special, something that brings joy, something that complete the family and should be talked about so proudly. So through FAAI, we want to let the whole world know that we are here and this is what we stand for," he said.

But even with such a group in existence, it could still be a big task for members.

It is no wonder therefore that the Medical Director, Nordica Fertility, Dr. Abayomi Ajayi, felt at first that the idea of people coming all out to speak about themselves being beneficiaries of a modern fertility technology, was something impossible. So when it eventually came to being, he got so overwhelmed.

Speaking at the launch, Ajayi said, "Today, is a very happy day for me because I have witnessed so many ideas coming to live but FAAI is a very special one for me because it was something that many people said was impossible to do in Nigeria."

The idea for FAAI started years back when Dr. Ajayi had conducted a study at Nordica Fertility Centre, during which 250 clients who had opted out of IVF treatments were interviewed. From the interviews, it was glaring that one of the major reasons people discontinued with IVF treatments was lack of emotional support and that made him to think quickly of a way out.

"As one of the few fertility clinics that have fully trained counselors, we discovered that emotional support was something that was lacking. One thing we also learned was that this support could be professional but at the same time, could also come from friends and family. And we knew that the best people that could give this message were people who have gone through it. So we started with a boat ride with successful ones, a couple of years ago and that was where the idea was born," the fertility expert recalled.

Then, Ajayi knew it wasn't going to be very easy to get people talk openly about treatment of fertility. But to his surprise, the beneficiaries took it beyond what he thought was possible. He realised that that FAAI members were so committed to the course of trying to let people know what they have benefited from.

"You know, the difference between we, the blacks and the whites is that when the whiteman climbs a mountain, he puts a marking where he puts his feet on how he got to the top but when a blackman climbs the same mountain, he comes back and erases the marks so that nobody is able to get there. But these people have not done that, they are sharing their experiences so that others will also benefit. I know even doctors who have gone through IVF but do not want to talk about it. They say they do not want people to know that their children are from IVF," Ajayi noted.

He also feels that if people continue with the fear of stigmatisation, and refusing to talk openly about IVF, they may end up opening themselves to quacks. "The more we allow hush-hush with anything, the more there would be quackery and that is why we have also been trying to see how we can at least preach this gospel of fighting infertility," he said.

One other thing that FAAI is capable of doing is to help in correcting the notion that IVF children are not normal as they have together with their children, displayed that IVF children are perfectly normal children. "We want people to know that children born from IVF are as normal as any child can be. We have interacted with a lot of children born from IVF and they have always been so exciting to be with. We really want to document them, looking at the neurological development of children born from IVF compared to children that are not born from IVF and we have been talking to some pediatricians and one has finally taken up the challenge now. The study takes a log while and the person must be trained in neurological development, and not just any pediatrician and so we have found someone who also shares that interest and would want to, may be for the first time in Africa, do a documentation on about 100 children born from IVF compared to other children that are not born from IVF because from my experience with some of these children, I have the strong feelings that some of these children born from IVF are brighter than their counterparts," he noted.

More so, FAAI, Ayaji said, came into place with a view to opening its doors to more members to help in supporting those going through infertility across Nigeria, adding, "While we at Nordica Fertility Centre are proud to be the technical (medical) partners of FAAI, we want more people to identify with this set of people and that is why FAAI is being launched officially. We don't want them to be lonely, because that is one of those things that makes people lose interest - when you are the only one talking and talking about it. So we want more people to join them so that we can go out there to propagate this gospel."

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