Whenever a couple finds out they are both carriers of the sickle cell gene, they are advised to terminate their union, to avoid the risk of having a baby with sickle cell anaemia.
If the couple should decide to go forward to have children, there is a 50% possibility that they will have children who are either carriers too or have the sickle cell disease themselves. The chances are worse when one is a carrier, and the other has sickle cell disease.
To help alleviate the stress of having children with sickle cell anaemia, scientists have come out with a process that will help to ensure that two carriers will not worry about their child’s genetic condition.
For the first time in Ghana, the Lister Hospital and Fertility Centre has successfully used this process, which is called the pre-implantation genetic diagnosis, to get a couple who were both carriers to deliver a child who does not have the sickle cell disease.
“This process of pre-implantation genetic diagnosis helps you to identify the embryos that are without a risk, and those that you can put back into the womb, guaranteeing that the baby that will be born will not grow to have sickle cell disease,” Dr Edem Hiadzi, the founder and CEO of Lister Hospital explained.
“The procedure means that instead of having one egg per woman at ovulation, you want to pick the best ones, so you stimulate the woman to develop about ten to twenty eggs. When these eggs are matured, are harvested, then fertilized with the man’s sperms, in the lab. As they grow, they reach the final stage of maturation on the fifth day, as an embryo that can live outside. At that point, you need to find out whether they are affected or not. It is done by taking them individually and taking a biopsy, with a little piece of the skin, which has all the genetic information, and analysing it to determine which are affected by the sickle cell disease, i.e. is it an SS, in the career stage like the parents, or without sickle cell completely. Then you get the woman prepared again for the transfer.”
When asked about the ethical issues surrounding this process, Dr Hiadzi said the doctors are only trying to help parents avoid the stress of having to care for children who may have the sickle cell disease.
“We are trying to avoid what would be bad. We are not playing God. When we do IVF and you have several embryos, in the normal IVF, which isn’t sickle cell-related, you would assess and put the best ones in, and the others, you discard them, if they are not good enough to be frozen for later use. In this case, you cannot tell by looking at the embryos. The only way is to do the genetics. Once you’ve done that, why would you put back a baby who will suffer for life? I think it’s God’s own wisdom that’s brought us this far to be able to help people.”
How do the new parents feel?
The woman, Kukua (not her real name) is very excited to have a child who is neither a carrier nor has the sickle cell disease.
“I feel very happy, very relieved that I could stay with the person I thought was my lifelong partner and be able to have healthy children. It’s a relief, and we are grateful to God, for the knowledge that he gave to everyone involved to make this possible.”
Her husband, on the other hand, felt the best he could do through the process, was to be there for his partner.
“I took it a day at a time, depending on what the situation called for. That was my general mindset, and focusing more on supporting my wife, because, at the end of the day, everything that happens will happen to my wife. My concern was to be a supportive partner because I wasn’t going through what she was going through.”
How much does the procedure cost?
Dr Hiadzi says that the procedure is not cheap at the moment.
“The cost of the procedure is the cost of an intra plasmic sperm injection. Because it’s a very delicate procedure, that you don’t want any contamination, so it’s one sperm per egg. That process of fertilization costs about GHS30,000. When you send the biopsies to Dubai or UK for analysis, it’s about GHS20,000. So the process now is about GHS50,000.”
He, however, hopes that a foundation will be set up that will help make the procedure cheaper and more accessible to parents.
“We are hoping that in the future we can set up a foundation, get support from philanthropists and government to be able to cut down the cost of the genetic analysis, at least for couples who may not be able to afford that.”