Discovering what our options were was difficult for me because the information is so dispersed, online and in real life. This post is your one-stop to answering the burning question “What do we do now? What are our options“. It’s a long one but I promise it’ll be worth your while. (Just remember to share.)
Having healthy children is a priority for most couples. To achieve this, ensuring that your partner is compatible is often the first step. Since you are reading this post, I’ll assume you are AS, SS or knows someone who is, then you’ll agree with me when I say our genotype is that silent factor that defines who you date or dump, for fear of having children born with the dreaded SS genotype, known as Sickle Cell Anemia.
Now, at the risk of telling you what you already know, I’ll start with the basics but I’ll be brief. Statistically, for two Sickle Cell Carriers (i.e AS and AS genotype) there’s a 25% chance of having a child with the the Sickle Cell disease (i.e 1 out of 4 children).
Please keep in mind that this 25% chance is not a rule, it’s a probability and probabilities are based on uncertainty. Let me explain: A couple could have all 4 healthy children and none with the disease, others all 4, 3, 2 or 1 with the disease. To be honest, it comes down to luck. To learn about the impact of Sickle Cell Disease on the family, click here
That said, grab your partner and brace yourself.
Yes, you heard me.
“If you love her, you have to leave her.”
This is most easily recommended, particularly by those who have never had to do it. It is presumably easier to find someone else who is not a carrier than to risk having a child with the sickle cell disease with the person you love, regardless of the odd.
Consequently, this is the road most taken and with good reason. Parents, friends, colleagues, strangers and even your enemies will pressure and taunt you with the death of children you don’t yet have. And then you will be labelled foolish and selfish for objecting to their suggestion.
“There are many fishes in the river.”
To be honest, no one cares about how much you really love your current fish or if you are uninterested in other fishes #justsaying.
Summarily, this is the cheapest and “easiest” solution to your genotype issue, except for a minor heartbreak. If you want peace, this is for you; Break up with your AS beau(x) for the greater good.
Chorionic villus sampling (CVS)
This is a prenatal test where your baby’s health is checked using your placenta sample, taken through your vagina into your cervix or the through your abdominal wall and then tested.
This test is usually done at 10 to 12 weeks of pregnancy and results take about a week.
Click here if you’d like to watch a video that explains this.(Viewer discretion is advised)
Amniocentesis is a prenatal test where your baby’s health is checked from a sample of your amniotic fluid i.e the fluid that surrounds your baby in the uterus. Like CVS, this procedure is mostly recommended where a couple are carriers of a recessive genetic disorder and other chromosomal abnormalities including but not limited to cystic fibrosis, sickle cell disease, and Down syndrome.
This procedure is usually done between 16 to 18 weeks of pregnancy by gently putting a needle through your belly into the uterus. Ultrasound shows the doctor where your baby is and where it’s safe to insert the needle. Results take about 2 weeks.
I’ve included a link to a YouTube video that further explains this procedure. If you have the stomach for it click here. (Viewer discretion is advised)
The difference between both procedures is explained in depth in this video.
The drawbacks with these procedures are,
● Tests aren’t exactly 100% conclusive.
● Tests have financial implications. Costs for these procedures range between $250 to $500, which includes laboratory tests, counseling and ultrasound.
● You are now faced with the decision to keep or terminate your pregnancy if your child is found to have the disease.
Now, I don’t question anyone’s moral compass so I’m not pro or anti-abortion. I think we all pick our crosses and live with their consequences. Each to her own.
Pre-Implantation Genetic Diagnosis (PGD)
Pre-implantation genetic diagnosis (PGD) involves checking the genes and chromosomes of embryos created through IVF (invitro fertilization).
The procedure involves undergoing normal invitro fertilisation (IVF) treatment to collect and fertilize your eggs. The eggs are fertilized in the lab with your partners sperm. After 2 to 3 days, the embryo made up of around cells, an embryologist removes and tests one or two of the cells from the embryo. Based on test results, the disease-free embryo is transferred to your womb. Embryos that are affected by the condition are allowed to die.
Now for the drawbacks.
●It is impossible to estimate the success rates for PGD because there is little data available. In the US, in 2010, 311 women received 383 cycles of PGD. This resulted in 121 live births (live birth rate of 31.6% per cycle started).
● PGD is expensive, plain and simple. Consultations, laboratory testing, egg collection, embryo transfer, ultrasound scans, and drugs could rake up quite a sum. In 2015, initial consultation at Nordica Fertility Centre Ikoyi cost N200,000 with a cycles of the procedure + drugs cost about N650,000. Unfortunately, I don’t know the cost of PGD in Nigeria but in the US it’s about $9000 depending on the hospital.
● Many find this procedure controversial, beginning with fertilization outside the womb which some perceive as “buying your baby” and then allowing affected embryos to die which others equate it to abortion saying “8 cells is still life and life is a child, you are killing sick children before they are born”
**Here’s a list of IVF Clinics in Nigeria. I can’t confirm which perform PGD or any other procedure. Do call and make your own inquiry.**
Child Adoption is still viewed with a lot of skepticism in most Nigerian families primarily because of the strong believe in a biological connection to be called ones child. Preferring the blood of my blood” or mini-me, most Nigerian men and women would just rather not explore this option.
However, this perspective is changing with western exposure and showing us all that adoption can be mutually beneficial and fulfilling for both adopting parents and the child.
Well, I’ve heard many tales about people who prayed and fasted and God changed their genotype to AA. That didn’t work for me.
There are couples who defied Option 1 above and couldn’t afford any of the others but believed that God will give them healthy children and He did. As a matter of fact, I know 2 couples, but the made sure to stop after 2 and 3 kids respectively.
So, if your faith is strong and you believe that God will carry you, I completely respect that. Like I said earlier, each to her own.
Yes, I know this is the road least traveled but a road none the less. Very rarely will a couple opt to remain together and not to have any kids at all. Love is hardly that serious, but it does happen.
In conclusion, let me emphasize that I am not a medical personal or any type of expert in the medical field. The information gathered in this post is based on years of research invested into try find a way around the genotype dilemma.
That said, whichever option you and your partner settle for, I sincerely wish you both happiness.
In late 2015, I stumbled on articles in the Vanguard, Daily Trust and The Herald discussing a cure for Sickle Cell Disease and stating that Nigerian doctors were to be trained in the USA on the procedure by the first quarter of 2016.
However, there are drawbacks with regards to the availability, risks, limitations and cost of the procedure since it’s new, and then finding a matching donor for the bone-marrow transplant. But it’s hope none the less.
In the meantime, do support the Sickle Cell Foundation Nigeria.
This article was originally published by Frances Awele Okolo of http://www.redconfidential.com on July 8,2016.