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premature baby born at 23w + 5 days

(30 Posts)
Xona88 Mon 13-Feb-17 20:26:32

Dear Mums

this is a very sad, difficult situation for both me and my husband.

it is my second birth:

- 1st was 21w and few days
- 2nd at 23weeks and 5 days

All of sudden i felt some sharp stiching pains and went for a check up, thats when they found out that the babys leg is pushing out and is the vaginal mouth ... stiching up was not considered as it may break the water.

Baby boy was born yesterday 775gram and is in intensive care sad

The docs did the head scanning and they seen bleeding in both side of the brain:

right side - large bleedings
left side - small to mid range bleedings

they said that there is no chance that the baby will not have a severe disability but will only be able observe when growing older ....

did anyone go through this like in our case !? and what were the implications in terms of the babies health / mental and physical condition?!

we are devastated and really lost ....

maybe it had been a better choise not to go for the assetitation and let the baby go ina better place instead of having severe disbilities and having to sufer all his life - and surely we will sufer with him every minute.

Please let us know your truth and choises you made and the difficulties and all the issues etc etc you been going through and the current stage of your baby with conditions like in our case.

I pray to God...

EggysMom Mon 13-Feb-17 20:45:53

Congratulations on the birth of your baby! I found that some people didn't feel comfortable about saying that but, when our son was born, I wanted things to be as 'normal' as possible smile This won't be the optimistic response you want, but at least it's honest.

Our son was 634g at his birth. He was born at 29+1 weeks but with severe growth retardation. We were fortunate, we had a week's notice of his imminent arrival and at least got the steroid jabs to help prepare his lungs. After his birth it was found that he had bi-lateral bleeds on his brain, and they said that they couldn't predict the impact of that.

Our son is now 7-and-a-half. He has auditory neuropathy, which is a nerve-based form of deafness; he does not talk, and understands little of what we say. Other than deafness he has no physical disabilities. He is autistic and has a significant learning delay. His functioning is around that of a 2yo.

But he is a complete delight, an incredibly happy child, sensory-seeking, without the usual meltdowns of autistic children. He adores routine and is happy when he knows what is to come and how to get what he wants (leading us by the hand). He attends a specialist school, and he has a good life.

Like you, we would not have resuscitated had the worst happened. But he proved to be a fighter, and came out of NICU just two days after his original due date. We are glad of the outcome, even if it was not how we originally planned his childhood and our parenthood.

Xona88 Mon 13-Feb-17 21:48:14

Hello EggysMom

i got 2 steroid jabs because i ended up in hospital for 27 hours until I delivered ... i was in a lot of stress and pain.

it breaks my heard when i read all the topics on here thaat their children have sufferend with different type of disabilities ...

God forgive me but we should have not opted for the resuscitated sad sad sad

my heart is sharted and broken in pieces ... why did god do this sad

I am praying that God will take his life and let him go in heaven instead of having a very difficult life , suffering and we suffering with him ... we cant cope and wouldnt be mentally prepared for severe disabilities sad sad sad

We are thinking to ask the Intensive Care to let his soul go sad(((((

god forgive us

MollyHuaCha Mon 13-Feb-17 22:52:25

flowersflowersflowers For you xxx

EggysMom Tue 14-Feb-17 08:04:57

What you choose to do, is up to you. Some may not make the same decision.

Introvertedbuthappy Tue 14-Feb-17 08:08:15

flowersflowersflowers xxx

ineedwine99 Tue 14-Feb-17 08:10:15

So sorry your going through this flowers

Frazzled2207 Tue 14-Feb-17 08:12:43

Congratulations on the birth of your son. I'm sure he's beautiful.
Wishing you lots of love, strength and hope
Xxxflowers

Afreshstartplease Tue 14-Feb-17 08:13:39

Congratulations on your baby, does he have a name?

Frazzled2207 Tue 14-Feb-17 08:14:27

There is absolutely no right answer to the quandry you find yourself in.
But whatever you decide will be the best decision.

NotAPuffin Tue 14-Feb-17 08:15:39

Oh, you poor love. God is merciful and would understand.

Ilovecaindingle Tue 14-Feb-17 08:16:00

He is your son and you are free to choose on his behalf. He will love you regardless of your decision and you will treasure his memory if he does go to a better place. Love and good wishes on this terrible journey. flowers

Northernlurker Tue 14-Feb-17 08:19:58

Your son has been born very, very early, as you know. Every premature birth is different and in particular babies who are born so very early are very different in prognosis from babies born even just a month later. Your son is facing months and months in hospital and many procedures. I think it is perfectly reasonable to say that actually it isn't about life at all costs. If you want to look at palliative care for him please discuss that with the doctors today and make a plan for his future care with them.

ElderDruid Tue 14-Feb-17 08:25:35

Congratulations on the birth of your son.

I know a baby born 23+6 & they are pretty much fine apart from problems with their eyes, speech delay & cerebal palsy, although you wouldn't really think they had the latter before diagnosis.

It's your choice ultimately, wishing you all the best.

AWhistlingWoman Tue 14-Feb-17 09:16:03

Congratulations on the arrival of your little boy. I am so sorry that you lost your first baby.

My twin daughters were born at 23+4. As I am sure the doctors have told you, 23 weeks is extremely premature and the outcomes are quite variable. As nothernlurker says it is a hard road, involving months of hospital and many procedures.

My husband and I agreed (under the advice of the doctors and nurses who cared for her) to withdraw life support from one of our girls. It broke my heart in pieces but I definitely felt it was the right choice for her at the time. She fought really hard and the doctors did everything humanly possible but she was too small and ill to survive or to have the life we would have wanted for her. We loved her very dearly and it was the most impossible decision I have ever had to face.

My other little girl survived her premature birth and, whilst she has a few difficulties which are probably related to her early arrival, she is in mainstream school and you just would never know to look at her that she was once a 23 weeker, 1lb 7oz baby.

It is so, so hard to foresee the future for these extremely premature babies. My only advice is to listen to the medical professionals around you and to your own heart and judgement. My daughters' consultant told me what he believed the outcomes would be within a couple of hours of arrival and he was absolutely correct, the doctors will have a lot of experience. Whatever your decision may be, it will be taken full of love for your little boy and with his best interests at heart. Likewise your decision to resuscitate.

I'm so sorry that you have to face this choice and I wish you, your husband and your son all the very best.

Xona88 Tue 14-Feb-17 17:49:46

thanks to everybody for your replies.

We named him OMAR which means "long living" sad and now us considering letting him pass away is so distroying and braken my heart.

the doctors said that the bleeding in his head are concerning / worrying and that where the severe disablities mainly come from .... brain is already damaged and the bleed increase further and may suddenly die.

They just rang us to ask if we did have any thoughts over it!! But it is soooooo heart braking for us because it is us who are "deciding" to take his life away and not God.

We believe in God and we are afraid that God will make js suffer even more if we go ahead with it .... !!!!

praying god for mercy and He shall take his life to heaven instead of us having to make that awful decision.

fact is that even without the bleeding, there would be other life complicates consiquences due to being so premature etc.

We wouldnt mind having minor issues such as needing glasses to better or being more prone to chest infections or speaking delays (as this is commen with kids, my brothers son is 3 and still not speaking) but yeh... we dont get the choice to pick and chose what to have or not to have.

all they are saying is that severe problems are high chances and what it may be cannot be forseen.

Ahhhhhh, there are so silly stuff that human kind complains about and yet when you are confrontet with cases like this -> it wakes you up!

I dont know, been crying all night and cant sleep ....

God Forgive Us
with whatever decision we make

Iamastonished Tue 14-Feb-17 17:55:59

EggysMom I don't think that is a particularly helpful reply to the OP who is going through an extremely difficult time.

Xona88 flowers

Northernlurker Tue 14-Feb-17 22:20:48

Op I believe in God. In moral, religious and ethical terms there is a huge difference between choosing not to have certain treatments, which may mean a persons death then ensues sooner than might otherwise have been the case, and choosing to have certain treatment which WILL ensure death takes place sooner than would be the case.^^ You are being asked what treatment your son should receive. You aren't being asked to end his life, don't torment yourself with that.

You may choose that you don't want exceptional, heroic measures taken to try and preserve your sons life. That doesn't mean you are choosing to end it.

I am a NHS manager and I've worked quite a bit with renal patients. Some patients are on dialysis treatment and that keeps them alive. Occasionally patients will decide they want to stop treatment. This is for many reasons, they may have another serious illness such as cancer, they may have become too frail to find the trek of attending dialysis bearable. The decision to stop treatment means that their life will likely end in days or weeks but nothing is certain. They are choosing their treatment, just like you need to do.

Your son is exceptionally premature. We tend to look at that as a condition that can be overcome, be battled with. However the true situation is that he's come thus far because of medical technology and skill which can try to combat the effects of his prematurity. Without that treatment he wouldn't be able to live as he is doing. That treatment comes with a cost and risks. You can make choices about that. As his parents it's your job to love and advocate for him. Like I said in my earlier post that doesn't necessarily mean by pushing for him to live at all costs.

I love the meaning of your sons name. He will live long because even if his life on earth is short, he will have life always as your dearly loved child.

Have you got any family support? Such a hard time for you both.

AWhistlingWoman Wed 15-Feb-17 21:28:55

Oh, Xona how my heart breaks for you and your husband. It is an awful, uncertain time. Even many years later, I still remember it very vividly.

Omar is a beautiful name and, as northern say no matter how long his life may be here with you, he will always be with you, in your heart and in your memories.

I just wanted to echo the distinction that has been made in the post above. I don't feel that you are actively choosing to end your son's life, just as I don't feel that I chose to end my daughter's. He is being kept alive at the moment with a great deal of medical intervention and, sadly, a lot of these medical interventions themselves come with a cost.

It is very difficult when nobody can completely accurately predict the extent of the future difficulties your son may face and it can remain uncertain in the weeks, months and year to follow.

As you say it does put all our usual dilemmas and complaints into sharp perspective. Being plunged into the world of the NICU certainly changed my world view permanently. It does wake you up as you rightly say!

And this is far out of my area of expertise but I cannot imagine a just God that would punish parents for doing what they feel is right for their child. The choices that we make for our children, especially when they are vulnerable, come from love.

Thinking of you, your husband and Omar.

Xona88 Thu 16-Feb-17 00:44:25

dear mums thanks alot
for your support and kind words

Dear Mums, thanks for your support and kind words.

After all the discussion with my husband and our families by taking all aspects into account and a lot of thoughts have been put into ...

we believe that our son OMAR should be rest in piece instead of suffering any longer in this world of unjust - nor us having to see him suffer at any point in his later life time (in case he made it through).

It is a very sad and a difficult, devistated decisions to me made by us which will hunt us for the rest of our lifes ...

this is dedicated to our son

******

OMAR

oh, Omar our dear son
you made mummy & daddy so happy
when we found out you are coming along

we were over the moon and
couldnt wait to have you in our room,
but things appeared to be different,
as we found out very soon.

Oh, Omar our beloving son
it breaks Mummy & Daddy heart
having to let you go...

We are sorry my son,
please forgive us for what we done.
Soon you will also join your big brother in Paradise.

*********

God may give us mercy and easy the pain we are going through, may Allah give us "sabr" (patience / endurance) to overcome such a difficult time and grant us happyness with another healthy child in the future. God forgive our sins and make us better / stronger.

Angelica85 Thu 16-Feb-17 00:54:40

God bless you, your husband and Omar flowers

Introvertedbuthappy Thu 16-Feb-17 03:19:47

God bless you and your family. What a beautiful poem about your beloved Omar flowers

Claire3346 Thu 16-Feb-17 04:22:59

Message withdrawn at poster's request.

ineedwine99 Thu 16-Feb-17 08:05:08

Thoughts are with you and your family. What a wonderful family Omar has and so much love

Northernlurker Thu 16-Feb-17 08:09:14

Claire- xona's baby isn't three months early. He's more than four months early. There is a big difference, sadly.

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