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Confused And Heartbroken: My Son Was Diagnosed With Sickle Cell Anemia - Health (4) - Nairaland 2j82b

Confused And Heartbroken: My Son Was Diagnosed With Sickle Cell Anemia (21399 Views)

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wellmax(m): 9:45pm On May 16
It’s not a death sentence and there is nothing wrong with being sickle cell disease patient.

him with a haematology clinic and for regular checkups.

I promise you there is nothing to worry about.

Daily folic acid and phenoxymethylpenicillin will make him fine.

Yes we advice people to avoid it, but once it happens talk these precautions and he’ll live a normal life.

Peace.

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Dronyemachi53(m): 9:47pm On May 16
BlueStripper:
Dear OP,

This is indeed a very sad experience and I can only imagine how you feel.

Please don't over-flog yourself. Medical Quackery is something we are yet to address in Nigeria.

Now back to the issue at hand. We will look at it from two sides:

1. If you are financially stable and really want to have healthy children with your wife in the future, then you must for preimplantation genetic diagnosis (PGD) whenever you want a child. Do not have much children because this process isn't cheap. So maybe 2 children.

2. If you are not financially stable but you want children, then father from outside and bring it home. Also make sure your wife truly understands the situation at hand and agrees to your plan.

DO NOT DIVORCE YOUR WIFE OR MAKE HER PAY FOR WHAT SHE KNOWS NOTHING ABOUT. DO NOT TAKE A SECOND WIFE.

As for your son, love him. Just love him. Love will keep him with you for long. But please, do not act in faith and impregnate the mother again or without proper medical counselling and PGD.

I wish you all the best and may Allah help you and your family in this tough time.

First there is nothing like medical quackery here..I'm not a medical scientist but it is always advised to redo the test, genotype and blood group in another facility for confirmatory purpose
turawaa(m): 9:48pm On May 16
1- firstly get a lawyer and sue the first hospital that gave AA before your New test confirmed AS.

2- During the first generation of Crossing AS and AS the F1 offsprings Are supposed to be AA, AS, AS and SS. But not always like that.

3- Go do NHIS or NHIA to subsidies your medical bills .

4- Finally, You need to sit down with your wife and have a heart to heart discussion about mutually separation.

Put Love aside in this discussion because if e sub finish, nah only you go see yourself.

And Mind you, I have a SS genotype lecturer that is 65years old already and still agile.

All the best in your decision

1 Like

oluwaseunla(m): 9:51pm On May 16
NovaStarGlow:

A 12-year-old boy named Kendric Cromer became the first patient in the U.S. to undergo newly approved gene therapy for sickle cell disease, according to NBC4 Washington. This groundbreaking treatment, along with other advancements like bone marrow transplants, offers hope for curing sickle cell disease. For example, a 5-year-old boy named Tobi Okunseinde in New Jersey was cured of sickle cell disease through a bone marrow transplant, according to CBS News.

That is true. However, bone marrow transplants have its own complications too, not to mention costs. But it's always one of the considerations.

1 Like

southernbelle(f): 9:52pm On May 16
OP smiley, your post is truly touching. I pray that God grants your family strength and makes this situation easier to handle.

This issue with incorrect genotype results is a clear example of the failures in our healthcare system. It’s good that you’re seeking advice before making any major decisions for your family’s future. If you both choose to stay together, there are options to have children without sickle cell disease. Some people have already mentioned prenatal testing during pregnancy, though it can be a very emotionally difficult process, especially if it leads to tough decisions like termination. Another option to consider is IVF using donor eggs or sperm from individuals who are not carriers of the sickle cell trait.

If relocating is something you’re open to, it’s worth beginning to plan for a move to a more developed country where your son can access better quality of healthcare.
TheGift: 9:52pm On May 16
Mdcool26:



*File photo attached by

I am sorry but it looks like you are not asking the right question.

Did you marry your wife solely t0 give you children- without health issues? Then you married for the wrong reasons.

Did you marry your wife because you loved her?

Do you want to divorce your wife for something that was largely your fault, even if we want to follow your fault finding mindset?

It's sad when you people treat someone else's daughter as an objecti that can be used and dumped without regard for even their thoughts and feelings.

Question: if your wife was your daughter, how would you want her husband to treat her?

Maybe, that is your answer.

1 Like

Iseoluwani: 10:00pm On May 16
Mdcool26:



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Honestly not everybody understands this OP problem. only those of us in it understand....

it is well....

2 Likes

vicetuh: 10:15pm On May 16
Mdcool26:



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my friend, don't be emotional about this, separate from her since both of you now know it is for the future.

1 Like

descarado: 10:19pm On May 16
I will leave the marriage period.

If it's the woman, you will abandon her and the child. Many men in this situation has abandoned the wife and married another.
Now everybody has ed God.

At this age and time, we are still hearing this kind of story.

Women should start being selfish in marriage. (That marriage will crack in less than 2 yrs time) It's careful calculation of what benefits you most on the long run. Its not even f...kn

1 Like

descarado: 10:21pm On May 16
vikstandon:
You see this child wey una don born, that's your nemesis... but a lovely one. He would bring you wealth, but you must give him all the care.

Love your wife, you can selectively have healthy babies through Preimplantation genetic diagnosis, but that would require aborting unhealthy ones.

Another option is to adopt. If you choose to father outside, fairness would also require your wife mother outside.

Pardon my expression... English language is an adopted means of communication.
Story story.
Maybe you never had a sickler in your lineage.
descarado: 10:24pm On May 16
MufasaLion:


There's nothing like "What God has ed together no man shall put asunder."

You all religious fanatics should stop using God to make people stay in an uncomfortable situation.
Help me tell them.
InDiscov500: 10:47pm On May 16
Psalm is you Savior,there are verses you will read in the water and pray to it and use it to bath the child
Chegesnd: 10:54pm On May 16
nosiebaba:
I believe Your son can be helped send me your email
People are proffering solutions here so that others can learn, but you want to do one aside.
OP beware of fraudsters!

2 Likes

MrRight007: 11:06pm On May 16
My case was also similar- I was misdiagnosed in Ibadan lab not knowing that I was AS. In a nutshell we had an SS baby. Now my son is AS - I'm guessing you will want to know how? This is process called grafting - a form of gene therapy where his bone marrow is replaced with the bone marrow of a healthy match. After him, we went in to prayer not to have SS again and we had 2 AS kids. Turns out the last kid is more than 95% match so his bone marrow was used to cure his older brother through bone marrow transplant.

Now this was done at Texas Children Hospital in the USA so I will advise you them to enquire further. Match can come from.anyone. You just need to keep praying and hoping.

My son is 17 now and he hasn't has any crisis. He goes for checkup once a year. He is now permanently AS

You are fortunate again that he is a boy meaning his testicle is detached from his body so the chemo session involved in the BMT process will not affect his sperm rendering him impotent.

SS is curable now through gene therapy. Pray and make your research. God will see you through

1 Like

aycorporat(m): 11:16pm On May 16
femi4:
Don't marry AS if you are one...you no gree

Don't be careless, perform genotype test from 2-3 test centres to be sure of yourself


Carry your cross

I hope you didn't escape from treatment or didn't you comprehend what he wrote?
If you have no meaningful contributions, please remain silent
sammiewrite(m): 11:17pm On May 16
Whether the OP its it or not, the misdiagnosis part of OP's of his story doesn't exist. During our parents time it was ignorance, but now it is largely some men's ego/arrogance making them assume they are AA because they don't fall sick. It could also be due to religious madness and/or the selfishness of not wanting to lose a partner that has been considered irreplaceable. So, all those talks of misdiagnosis are familiar tales that are now becoming boring.
And for some people on here who are trying to trivalise the gbege that OP just ordered, deceiving him that sickle cell is not a big deal, and that they know a 60 or 70 something year old or that one local mixture or church can help cure the disease. Well, for one, medicine is still your best bet. And yes, sickle cell is a big deal both to the patient and the parent/guardian. You won't understand this statement now but I say give it five years.
3kay945(m): 11:41pm On May 16
Firstly, I am sincerely sorry for your case.

Secondly, your pocket will determine the action you will take.

However, it is not going to be easy!
Seunpapa65: 11:45pm On May 16
Mdcool26:



*File photo attached by
The deed has already been done I will advice you to check early when the baby is still forming in the foetus for the genotype so that you and you wife can decide if you will remove the baby when he is still in the womb and for this one that have birthed it's too early to manage him make sure you take him to hamatologist for early diagnosis sickle cell is not a dead sentence I see no reason to divorce your wife now the deed has already been done I wish you well
Seunpapa65: 11:47pm On May 16
MrRight007:
My case was also similar- I was misdiagnosed in Ibadan lab not knowing that I was AS. In a nutshell we had an SS baby. Now my son is AS - I'm guessing you will want to know how? This is process called grafting - a form of gene therapy where his bone marrow is replaced with the bone marrow of a healthy match. After him, we went in to prayer not to have SS again and we had 2 AS kids. Turns out the last kid is more than 95% match so his bone marrow was used to cure his older brother through bone marrow transplant.

Now this was done at Texas Children Hospital in the USA so I will advise you them to enquire further. Match can come from.anyone. You just need to keep praying and hoping.

My son is 17 now and he hasn't has any crisis. He goes for checkup once a year. He is now permanently AS

You are fortunate again that he is a boy meaning his testicle is detached from his body so the chemo session involved in the BMT process will not affect his sperm rendering him impotent.

SS is curable now through gene therapy. Pray and make your research. God will see you through
The cost of the treatment is too expensive not everyone can afford it

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GemUnique(m): 11:48pm On May 16
turawaa:
1- firstly get a lawyer and sue the first hospital that gave AA before your New test confirmed AS.

2- During the first generation of Crossing AS and AS the F1 offsprings Are supposed to be AA, AS, AS and SS. But not always like that.

3- Go do NHIS or NHIA to subsidies your medical bills .

4- Finally, You need to sit down with your wife and have a heart to heart discussion about mutually separation.

Put Love aside in this discussion because if e sub finish, nah only you go see yourself.

And Mind you, I have a SS genotype lecturer that is 65years old already and still agile.

All the best in your decision

The number 2.

That's not exactly how the medelian rule works.
That you just crossed means which each conception, there is 50% chance of the child being AS, 25% chance AA and 25% chance SS.

See it as probability.
A closed basket of 2AS, 1 AA, 1SS, dipping hand while blindfolded, one may be unlucky to pick SS first.

2 Likes

BlackyOne: 11:58pm On May 16
It will definitely cause strain on your marriage, but don't give up... My first thought was to Insult the life out of you and your wife, but having read through I opted for peace.

I'm more concerned about the suffering the boy would occasionally and more frequently will have to go through...

Try not to give birth to another, you already have two kids. Stay with your family and your wife and kids, love them genuinely and tell them always, most especially your wife. I hope she's a good woman that gives you peace.

Lastly, may you be unfortunate should you ever leave your wife and children on of this particular issue.

1 Like

GemUnique(m): 11:58pm On May 16
Mdcool26:



*File photo attached by

It's a sad situation, but it's happened already.
Separation is a far resort. The kid may be affected.
Now that you know what you have at hand, the care matters.
Regular clinic visits, compliance with routine drugs and he will just be fine.

If you desire more kids; then you really should talk preconception counselling serious.

If you have the money, your genotypes can't stop you.

Chrionic Villus Sampling can be done with each conception.
Another alternative is PGT (preimplantation genetic testing) with IVF.

1 Like

ezugegere(m): 11:59pm On May 16
vicetuh:
my friend, don't be emotional about this, separate from her since both of you now know it is for the future.
Very wrong advice
yeremishe: 12:01am On May 17
No causae for alarm---Just adhere to the following advice
(1) Identify a good hospital with an experienced Haematalogist that will advise you guys the best medication to be istering to him daily, and the regaular check-ups that are necessary.
(2) If you can afford it, for subsequent conceptions, you both should consider IVF with PGD so the embryo can be screened of any condition, in this case SS before tranferring into your wife's womb. It is expensive but strongly advisable. Pre-implantation genetic diagnosis (PGD) is a laboratory procedure used in conjunction with in vitro fertilization (IVF) to reduce the risk of ing on inherited conditions.
(3) By the time you guys have more kids from (2) above which will be free of SS, then you could consider Bone Marrow Transplant(BMT) using (2) as compactible donors to (1) above. BMT is the only cure for SS for now.
(4) First thing first, take number (1) seriously and follow it up to the later with the help and guildance of doctors, particularly Haematologist.
(5) You must be very intentional and meticulous with the daily medications for your son.

1 Like

Johnn74: 1:05am On May 17
undecided
Acidosis(m): 2:18am On May 17
You must take full responsibility for your actions. Your wife could divorce you on the grounds of deceit and dishonesty. It is highly unlikely for an educated Nigerian adult not to have undergone genotype testing at least two to three times before marriage. The first test typically occurs during childhood, followed by tests during ission to secondary school and higher institutions, and then your employer. You deceived your wife and must fully accept the responsibility. That's the first step.

The second step is to avoid placing this "burden" on your wife, as she is completely innocent. Be there for your child and take full responsibility. Whether anemia is a factor or not, raising a child is never easy, and there are no shortcuts. Anemia or not, you will need to sacrifice your time, money, and well-being. The only place where child-raising seems easy and smooth is in social media content creation. So, let no one deceive you: the journey will be tough, but you're not alone unless you fall for deception.

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