When 2 thal minors want to have children.

Dear Friends,

My husband & I are thal minor.  I have had two pregnancies.  The first one was quite a suprise and i wasnt ready emotionally for all the decisions i had to make.  Everyone in our families told us that we had to terminate if the child had thal major (including my husband) I was devastated and i felt like i was pushed in a corner.  I did my CVS testing and i saw my baby on the screen.  I remember looking at the baby and saying dont worry whatever you have i will still bring you into this world against everyones wishes.  I waited 10 days for the results........The baby had no thal (at all!!!) and it was a girl.  April 24th 2003 my beautiful baby was born and i thank my lucky stars that she was healthier than us!!!!!!

After her birth i started researching Thal Major.  I used the internet, books and i went to the Thal unit at Monash Medical centre.  We looked into PGD testing (like IVF but they test the embryos before implantation) however this was a costly procedure....$8000.00 and  i only get a 25% chance f falling pregnant.  At the momment i have a 75% chance of having a healthy child.  We talked about the treatment for thal major children and life expectancy and an insight to what it would be like to raise a thal major child.  After 2 years of research i have decided that i will terminate the pregnancy if i was carrying a thal major child.

The second time i fell pregnant i was sick with worry.  I would cry nearly every night and i prayed to God that he would give me a healthy child so that i didn't have to make the awful decision to terminate.  I went for my CVS test and when they performed the ultrasound the unthikable happened.  My baby had died......They could not locate a heart beat.................  I was in a state of shock...All i could say over and over again was NO NO NO.....................  I came home and the next day i went to the hospital where they performed a D&C. My little baby had died.....    I came home and i just wanted to break things. I was so angry.  I asked to get my baby's remains and i buried them in my garden.  I feel as if God had taken him away from me to spare me from making that awful decision.  I believe my little baby whom i named Ethan had Thal major.

Today i am trying again.  I dont think deciding to terminate your child is ever an easy decision (well not for me anyway) All i can say is that i know i have made an informed decision.  I read another post where a young woman had thal major and she wanted children she feel pregnant against her doctors wishes.  She was weak and got very sick when her babies were 26 weeks of gestation.....she died along with her 2 babies.  Having 1 child and being able to fall pregnant is such a big privilige and the best time in my life ....How could i deny this from my child if they have Thal major.

I want to give my 3 year old daughter a sibling......  i wanted 3 children but because of this we will be happy with 2.  I am taking a gamble,  a huge one.  I never want to terminate a pregnany but i feel that this is the right decision.   

Every time i think about terminating i cry.  I dont know how i will cope with having to make that decision.  My  baby Ethan died on his own and that felt horrible and there was alot of emotional issues that i had to overcome and i am still trying to overcome.  I can t even seem to comprehend how i will feel if i had to make thet decision.   

Welcome to the site! It's really heartbreaking to hear about your second child!

As you might already know that 2 Thal minor are at 25% risk of having a Thal Major child. So, be optimistic that you have 75% chance of having a non Thal major child!

Furthermore read posts of our valuable member "Miaki" She really is an inspiration for all Thals. that are planning to become parents!

I would personally like to request Miaki (if she's reading this) to help you out in this regard and tell you how she; being a Thal. major and married to a Thal minor/carrier has a wonderful complete family!

Hi

Have you never thought of adoption? Since you are so lucky to have a child of your own, may you could think of adopting a baby and not put yourself again though all the trauma that you went through the last time.
And let me tell you one thing, raising a thal child is never easy. It might put you through even bigger heartaches, desperation and at times totally at a loss.. not to mention, the pain the child will have to go through, even today in 2006.
It needs much more than attitude and acceptance to raise a thal child, whatever said and done.

I have gone through that, so I know. Even after 30 years, the heartaches never seem to go away, no matter how brave I have been .... not to mention all the complications some Thals go through.

So now that you have a beautiful girl of your own,  please do think about adoption.. you could make a wonderful mother to someone who has no one.


Shikha Mitra

We have thought about adoption however i am worried that i will not love my adopted child as i love my own.  I am also afraid that our families will not accept our adopted child as much as they have accepted and cared for our little girl.

Believe you me i have looked at every posibble way to make our lives a little less complicated. 

I understand that looking after a thal major child would be hard and emotionally heartbreaking and physically draining.  I got a small taste of it when i took my daughter to hospital for a minor procedure and she just screamed in pain.  i was crying with her instead of lending her support and encouragement and then i felt faint that the doctors had to make me go to a different room and sit down as i had gone white and my mother looked after my daughter.  That experience scared the hell out of me as i realised that this would be an every day occurence for my thal major child and myself.  Like any mother i do not want to see my child in pain.

I hope you guys understand me.  I dont believe i am selfish for not wanting to bring a sick child into this world.  I am looking out for my daughter the most as i will be compromising my time with her.  Look i have a 75% chance of having a healthy baby so as i see it the odds are in my favour. IVF is very costly and Adoption....  well i dont trust myself enough to love someone else's child as i love my own...And that would be devastating to the adopted child.  i never want any of my children to feel less important or less loved than the other.

Welcome to the site Jemma,

We can understand what you and your family have gone through as many of the members here have some relation with Thalassemia and I know it hurts when we have to go through it.

Have you researched about saving the cord blood when the baby is delivered and doing a transplant (in case the baby is a Thal{Major}). This is something I have seen and I think some other member might be able to shed light on it more.

You are really lucky that you have a little angel of your own in your home. Also, if your daughter's HLA matches with your new born, there is an option of Bone Marrow Transplant(Again, that is a risky procedure, but there are quite a few cases who have done a successful Bone Marrow Transplant)

-Narendra

Hi,
I know $8000 is a lot of money but raising a thal child will cost far more than that financially. The long term care costs are a factor and should be considered. That far outweighs the cost of in vitro.

And, please, do not go by odds. 25% may seem like a low probability but this group is full of people that fall into that 25%. I have met people who have three thal majors in their families. Odds mean nothing to them and shouldn't to you. You have to be realistic and realize that there is a good chance of having a major and if you decide to get pregnant you need to be prepared for that possibility.

There is one thing that I feel is the most important factor. You have to consider the child who will have to deal with being a major. If that child asks you why, what will you say? Are you ready to tell a child that has to live with thal that you made the right decision? I know these are blunt questions but anyone willing to risk having a major should be prepared to answer them. I think it would be very good for you to talk to some patients and observe what their lives entail before you make any decision.

I think you will hear a range of thoughts on whether or not it's ok to bring a major into the world. I will not comment on that because that has to be a personal decision but you do have to look at yourself and ask if you are willing to have the strength to be a parent of a major who willingly chose to take that risk. It's a hard question but one that must be asked. If I was in this situation, I would go the in vitro route.

Jemma,
     I am so sorry you lost your baby - what a traumatic experience. Ultimately it is your decision about what to do, but I wanted to tell you about my experience with adoption. I have Thal intermedia which requires transfusions. My husband and I couldn't have children as it turned out, due to problems he had, so we adopted. We have 2 children who are so wonderful. We never think about them not being our biological children - we love them unconditionally. We were lucky to get them as babies. I'm sure you would love adopted children as well, but I understand your desire to have biological children.
      I agree with Andy that $8,000 is not that much considering the high cost of Thal treatment. You, however, can only do what you feel is right for you. Good luck in your decision.   Jean

Hello Jemma,

My deepest sympathy for your baby Ethan

I placed a similar post on MSN a few years ago.  I think it has some relevance to you and that’s why I feel I need to post it again now.

My first born daughter died for no reason before I could say a proper 'hello'.  I thought I would never want to have another child as the pain of loosing her is so deep.  Although her life was short I will never regret that we decided to have a family. At least we were blessed in loving her, rather than having never known this love at all.

I'm a female in my early thirties living with Thalassaemia Major.

If you ask my mother, she will tell you that she may have had guilt because of  her own insecurities about giving birth to me, but she will not regrets now that I am here.

If you ask my husband, he will tell you I am a blessing to him and not a burden

If you ask my second born daughter, she will not understand what your talking about, as I am simply “Mum” to her and my condition doesn’t even enter into it.

My mother would have deprived my daughter of her life,  if she had decided to deny me mine.

Don't look at your unborn child as a condition, look at s/he as love, life and your child. Our children are our legacy and I can think of no greater pain than to look back in twenty years and wonder what might have been.

Regards

floWer
Victoria – Australia

When two thal minor’s want to have a child............interesting.

Why can’t we change the topic to: -   “When two people want to have a child?

A child is created because two people love each other unconditionally. I didn’t realize that having a child with thal major is such a bad thing in today’s society. You could say to yourself but why bring a child into the world to suffer and go through the pain? Good question.

Back in the earlier day’s having a child with thal major was hard, the life span of a thal major baby was difficult to determine. Things have changed from the 60’s and 70’s, we are in 2006 were research into Thalassaemia is becoming world class and here in Australia and of course other parts of the world,  thal major patients have the best of care.

For me Living with thal major really hasn’t been that bad. You might say that I have been one of the lucky patients with no complications and real major health issues. I do have my mother to thank for 1) brining me into this beautiful world we live in and 2) for encouraging me to do things, for showing me that I only have thal major, a condition  – its not the end of the world. Thal major is a condition providing you manage it from day one then your in control of it not it of you.

I have lost many, many friends due to thal in their early 20’s but that was some 15 years ago. Now days we are all encouraged to live a “normal” life – and what is “normal”?

Firstly I was told my life would end by the time I got to my early teens. Now I’m 37yrs old, I was told that I wasn’t able to have a child ….my child will soon be 12yrs old. As a mother you always feel for your child. I can say that my child is what keeps me going on a daily basis. He is my tower of strength. Like myself and Flower there are many thal major patients who have successful jobs, have committed with their partner and have families, travel, and do or have achieved what any normal person have achieved.

Like Flower said in her wonderful post  quote ” Don't look at your unborn child as a condition, look at s/he as love, life and your child. ”

My deepest sympathy for your baby Ethan. I do wish you and your husband the best of luck and I do welcome you to our big virtual family. Please take care and keep in touch.    Miaki


 

Dear Friends,

The message that i am getting from most people that have been so kind to reply is that if i fell pregnant to a thal major child i should have it.  From what i have understood from Maiki and Flower is that you guys are grateful that your parents bought you into this world and you live your life as a normal person would. Could you garuntee the same for my child? The topic when 2 thal minor want to have a child? is exactly that.  It is far different from when 2 normal people want to have children......  We are carriers of this genetic condition which could be passed to our children.  So in my eyes there are alot of issues and dilemmas that we needed to address.   I believe in life not being so black & white.  I have thought about my child having complications and possibly dying before i do.  How about if at the age of 20 my child decides that he does not want his pump or his blood transfusions.  Do I watch him die?  How about if my child resents me for bringing s/he into this world when i did have an option not to?

I have a cousin who has Thal major and she describes to condition to me as "I have to struggle to live"  She is 37 and works as a part time teacher and married.  She told me that she did not want to have kids as she did not know how long she would be around for.  She is currently having blood transfusions every week and looking weaker and weaker by the day.

I have heard in Cyprus Thal is a huge epidemic.  Churches wont marry you if you both have thal minor....and apparently even the archbishop has called for the termination of such babies.  Harsh i know but so true.  They say that in 10 years time there may be a thal epidemic in Australia.  However when i spoke to professionals in this field they have told me that more and more people are opting terminating the pregnancy. 

Trust me i do not want to terminate a pregnany on this basis.....but i feel like pushed into the corner.  There is no changing my husbands mind or our families mind!!!!!!!  People have actually called me selfish if i decided to bring this child into the world.  They see it as i saved myself the misery of terminating and gave my child a lifetime of pain.  I have heard the pump is very painful?

I am caught in between....In vitro out of the question as its $8000 for ONE try with only a 25% chance of having a baby.  I hope that i am not coming across as arrogant but i just needed to vent as with everyone i speak to does not wish to hear what i have to say or feel about this......I mean even i dont know where i stand......

My sincere condolences.

But can I just ask you one thing?
When did you find out that you and your partner were both Thal Minor carriers?
I'm not having a go at you, but surely you would've had a discussion with your partner somewhere along the line before getting married about having kids in the future.


The younger Thal kids today have got a better start in life than what we had back then.
They can get on top of things.
Treatment today is better than what it was 30 odd years ago.
There's stem cell; BMT; oral iron chelators - L1 & ICL670.
Development is normal (Growth, bones, organs)
Screening of blood for viruses.

With us older patients, some of the damage was already present before Desferal even became available in the 80's.
For some it was too late.

When I was born nothing was known about Thal..We were and still are the guinea pigs.
There was no testing to see whether the embryo had thal.
There wasn't any support groups for our parents.
No internet.
There was only what Dr's knew, which wasnt re-assuring.
Dr's werent much of any help.
Doctor's told my mum I wouldn't live to see pass 9 years old.
I'm 34 now.
It was hard for my parents.
I'm the youngest in the family with 2 older siblings whom are both normal.
I guess I'm the lucky one - the chosen one.
My mother didnt want to have another kid after I was diagnosed with Thal.
It was hard for her to see me go thru what i was going through and didnt want to see the same thing happening to the next child if she had gone for another child.
I'm sure she would've liked to have had a 4th child.
I'm shocked to hear that the archbishop approves for the termination of  babies diagnosed with thal...Isn't it a sin?
Who knows what can happen in raising a child in today's world..
I'm not being biased, Whether he/she has Thal and leads a normal life, gets married, has 2 kids, and goes on to study medicine at Uni, or if he/she is normal, but hangs around  with the wrong crowd, and becomes a drug addict, and steals to support drug habbit and then ends up in jail.
Both theories are real and are not fictional.

Kind Regards

AD

My thoughts are you don’t mess with Mother Nature.
Yes I am very grateful for my mother bringing me into this world; both my parents were and continue to be great parents and grandparents for my child. If my mother aborted her pregnancy I would not have been here today, I would not have achieved what I have achieved today and I would not have experienced the most beautiful thing in the world – childbirth.

How can you ask if we are grateful for our parents bringing us into this world and living our life as normal people…we have a disorder not 4 eyes, no arms and are not able to do anything. NORMAL HEALTHY people sometimes have a stroke of bad luck and end up in a wheelchair or dead. Find me somebody that can guarantee you good health, and eat my words.

You say about aborting the child if its thal major – perhaps we should start aborting all thal carriers (they are the ones who start the process) …wow that would kill off half the population.

Like many we all rebel against going to school, parents, and other issues and yes your child might rebel against not using the infusion pump, s/he might also not want to show up for a blood transfusion but trust me that’s all normal. We all rebel against things daily and your child wouldn’t be normal if they didn’t rebel. I rebelled and did the blame thing on my parents. But my mother taught me the most valuable lesson in life (I have actually done a post on this)

Your child will love you and thank you for bringing them into the world. They will thank you for loving them unconditionally and they will be a strong person and you will be the person they will thank.  Each and every one of us is an individual and we can cope with what we can manage. As I mentioned in my previous post I’m 37 yrs old and I have a child, I have life, I work and I do all normal things.

In Cyprus there WAS a huge epidemic but since the churches brought in this law that all couples must be screened for thal trait and if they are positive they must receive counselling and then only then he will marry them. He does not say you must abort.

Yes there “might” be a epidemic in Australia of Sickle Cell Thalassaemia as there is a influx of different nationalities coming into the country and they need to be educated and not only them but I am soon realising that the old school thinkers need to be re-educated in what thalassemia really is and how it effects one.

I do feel for you as you are standing at a cross road and you don’t know which way to go left, right, straight or backwards. Perhaps you could get in contact with some of the patients with thal major and speak to them if they are willing and see what its like. We all deserve a life and nobody should take anything away from nobody.

I do wish you all the best and please vent away as we will vent also. 

Miaki

Hi  Gemma.

I can sense your fears because 25yrs ago I was in the same predicament,I was pregnant with twins and I wanted to terminate my pregnancy for many reasons.
At that time I was counsel by an older Nurse and she reminded me that all the birth has a purpose therefore it was not my doing and I will be leaving with my conscience everday for the rest of my life.If I think I can do that go ahead if not just go with the flow of life.It was the hardest decission I ever have to make ,I went through with my pregnancy .
My sons are now the pride and joy of my life they are everything any mother would love to have for sons.I still feel guity, that I had the thought of getting rid of them .
I'm so glad I listened to that lady and I weighed the pros and cons.
Final desicion lies with you, your hushand and your needs to do what you both think it's best for your circumstances .bare in mind that we cann't live our lives in fear of" what if"
I hope sharing my experience with you and all on this forum with help you to come to some undestanding and you will make the right choice for your family ,Its not easy, any which way there is a consequence.Good luck and may god guide you in your decission making.regards kathy.

We found out that we were both Thal minor about a year before i feel pregnant....Sure we discussed the implications but i felt that i had a while before i would fall pregnant so i needed have worried about it at the time.  Yes i know i was very stupid to do this. 
Every time i came into this site i see Lisa Camilleri at the front......she died....she was so young...Why did she die?  How could any parent live and carry on if their child died before them...i know i couldnt and it will just break up our family if it did.

I do not believe in a termination f a pregnancy but if that child has a life long illness with possible complications then i feel that i am sparing them the pain.  I was just looking for a little support cause all this still hurts.

And with terminatiing all thal minor babies?  What are you on about....  The Cyprus goverment is calling for the termination of Thal major babies as it is costing the community a lot of money to provide the medication for these children.  Of course we should do whatever it takes to help the babies that have come into this world with this condition.

I dont expect anyone to understand where i am coming from unless you have walked a mile imy shoes.  Eveyone lives are different to others with different influences around them.  I understand that the people with Thal major who have responded to me may have different opinions to this and i am sorry if i have offended or hurt anyone.  Its just that this is very difficult for me

I would like to correct the implication that the Cypriot government is calling for the termination of thal major babies. That decision is left entirely to the parents. The only requirement by law is premarital testing. Abortion is made available but it is not required.

http://chronicle.com/colloquylive/2003/04/eugenics/

Before marrying, Cypriots must be tested so that carriers of the disease gene can be identified. They are then offered genetic counseling if they marry, and abortions if a fetus is determined to have the disease. Even though the only requirement is the premarital test, the program has resulted in the near-elimination of new cases of the disease.

As far as Miaki's facetious statement about aborting carriers, she was simply trying to make the point of where do you stop when you start aborting fetuses that are majors.

Some parents do indeed choose to terminate a pregnancy if the child is a major and that has to be their own private decision. As I have said elsewhere in a post, in some places, abortion may be far more humane than allowing a child to be born into a life where NO treatment at all is possible. This is a harsh world and for the poor, it is far more harsh. Bringing a child into a miserable short existence may seem to be the far worse choice for parents who will not be able to afford any care and abortion will be chosen. These parents do not need condemnation. This is a very difficult choice but it is their choice. Even for parents who are in a situation where care is possible, the choice to bring a major into the world may be very difficult. I have had majors tell me they wish their parents had abortions instead of bringing them into life and I have had other majors tell me that their lives are fine. This often depends on what they have experienced in life and for some, the experience has been overwhelmingly negative. Yes, walk a mile in their shoes before passing judgement.

Jemma, you are full of uncertainty on how to proceed and say that in vitro is too expensive for you at this time. I would say the same to you that I would say to any potential parent who has doubts about what is right. Be patient, pray, talk to others and when you are certain what you want to do, then proceed. You are right about Lisa. For her mom to see her die before her was the worst thing that could happen. It as though her own life has ended. Lisa died from a combination of hepatitis C, which destroyed her liver and iron overload that greatly diminshed her heart function. Her mom carries on and even continues to raise money for thalassemia but she has lost both her husband and daughter to thal and the pain she has to live with is immense. Lisa was my best friend and losing her was like losing part of my own life. This is reality. We always have to realize that anyone can die, thal or non-thal. My own "healthy" brother died from a heart attack while my dad was still alive. It is very hard for parents to outlive their own children but it happens often from many causes. To be a parent is to accept this possibility.

Only you can decide when the time is right to try and conceive. Only you can say if you have the strength to deal with having a thal major child. It is a risk through normal conception and you do not believe in terminating the pregnancy, so if you choose to have a child, you must be prepared for this possibility. It takes dedication and lots of love but many parents do raise majors and from these posts you see that many have very happy lives. You have the advantage of living in a country that offers excellent care for thalassemics and that is a big positive. You must weigh all this with your husband and decide when you feel ready to proceed. To be honest, it troubles me that you had such a hard time when your child was in the hospital. I am a parent of five children and have been through near death experiences with one of them due to severe asthma. There is nothing like the feeling of seeing your child taken unconcious aboard a helicopter to be flown to another hospital, while not knowing if the child will still be alive when he gets there. To be a parent, you have to be able to deal with any possibility. I don't want to sound uncaring, but you need to find the inner strength to deal with whatever comes along for the child you have and any future children you may have. That strength is inside you and it is up to you to find it and use it when needed. When you can handle anything that life throws at your child and have the strength to be there for her, you will see that that strength was there inside you all along. You have dealt with terrible things before and survived. Things will not always seem as confusing as they do today and at some point you will wonder what the uncertainty was about. You will make a decision and know that is the right decision.

I wish you all the best. Please remember that you have already been blessed with one child. When you see the positive in your own life, it makes it much easier to deal with whatever challenge life presents next.