Advice please! Adopting a thal major baby

Thanks for the support and confidence all. Theres a sense of family feeling on these forums. 

I have a million & one questions in my head but at present I am reading through these forums and educating myself about everything. There is alot to learn & this is my primary goal at the moment.

I dont have a date yet of when he will be coming home but I hope it is soon. Before the adoption can be finalised I need to get approved at a matching panel for the little one.

I will be making contact with my local Thalassemia centre & the nearest one for me is in Leeds, West Yorkshire. I am not sure if I should be asking this on a new thread but if anyone knows of a specialist Thalassemia medical centre or any good doctors in UK please could you let me know.

Thanks
Sajeda

Gosh, bought on tears!!
I'm so happy that Allah guided you to him and him to you.
Heartfelt duas coming your way Sajeda.

I have two sons with thal and both are the most beautiful son's I could have ever hoped for.
Truly Alhumdulillah.

Lots of love!
Emby.

Congratulations. I wish your little angle a life full of happiness and good health.
Please contact the UKTS to get information about a good hematologist in Leeds or nearby.

Thank you so much for the advice and kind words.

All being well Baby Y will be moving in with us in July. Im so so excited and just cant wait till then. I hope I can be just as good a parent as all of you in managing and supporting with his condition. Truly amazing what you do for your children. Requesting lots of well wishers and prayers from this community.

Is there anything I should familiarise myself before he arrives?

I have a meeting to visit the local Thalasemia centre in Leeds next week. Taking it step by step.

You're already going to visit the thal center, so other than that, continuing to talk to other parents who have adopted thal children will be the best thing to prepare yourself.

Hi all

First a big big Eid Mubarak to all those people who are celebrating.

Update : Thanks for the help I have had from this forum. I am going to meet baby Y for the first time tommorrow and all being well ( hopefully he will attach to us) , he will be home with us in a week. So now my journey starts. I am nervous and excited at the same time. We will be attending his medical appoinments with him this week. He seems to be doing well. He is 6 months old now and has had 2 x transfusions in his short life. Any tips / advice about supporting him with his transfusions will be much appreciated. I have been told he doesnt like them and cries and has to be held down.

Hello, how are baby Y & you doing?

Dear Missy 123,

I hope you and baby Y are doing well.  Please let us know if we can guide you in any way. 

Sharmin

Hi everyone

Baby Y is a lovely boy and we are head over in heels in love with him. He has been with us just over 3 months and things are going well. He is 10 months old now.

I am very confused about his condition , he has blood tests every two weeks and his hgb levels  vary between 70 and 80. The haemotologist said they will not transfuse him unless the levels drop below 70.  Baby is developing well and has learnt to crawl and is trying to walk. Previously we were told he was  thal major however he has not needed any transfusions since May 2016 and therfore the specialist now is diagnosing him as a possible intermedia patient. Baby Y has inherited hbe gene from his birth mother and thalassemia gene from his birth father. At present it is unsure how severe his thalassemia is. He is having daily supplements of folic acid.

At this stage I dont know what I should be doing with him?
When will he be diagnosed fully?
Are there any more tests he should be having to determine his condition?

Any advice would be helpful.
Sajeda

Has he had a DNA test to determine the exact beta thal mutation? That would aid in predicting the eventual outcome. HbE beta thals do have some ability to adapt to the lower Hb levels, so a decision to begin transfusions should be approached cautiously, should the Hb drop a bit.

Thanks for the reply Andy.

 As far as I am aware there was a genetic analysis when he was a few months old which showed that he has a severe beta plus mutation, both the birth parents were tested and baby Y has had regular blood tests.

The haemotologist is erring on the side of caution with the decision to transfuse him. His decision is that should baby Ys blood levels drop below 70 then he will have a transfusion.

According to his latest medical reports the diagnosis is possible beta thalassemia intermedia based on his development and regular monitoring of his hb level
When will we find out what his outcome will be?

I agree that transfusion should take place if he drops to 7. The only thing that can be done is to continue to monitor the Hb regularly. I do not believe there is any method to accurately predict the outcome. Some patients level out in the 7-9 range, while others drop below 7 and need blood. The severe beta thal phenotype does make it more likely that the child will eventually need to transfuse. Folate may help to keep the Hb level up a bit.

Thanks

That makes it a bit more clear for me. So at the moment baby Y will continue regular blood tests and monitoring. The doctor suggested we do his blood tests again in four weeks instead of two.

On a seperate note babys court hearing is coming up. Wish us luck and prayers that his adoption order is granted very soon. It feels like yesterday I started this thread when I was undecided.

Thank you to this community for helping me make this big life decision. I dont even think about his thalassemia anymore its a part of him , yes but he is so bright & clever and just adorable. We have seen him take his first steps and heard him say his first word.  It has been truly amazing and we love him. Our family is complete with him.

He didnt come from my tummy but he came from my heart and thats where he will remain forever.