No hope

I am so sorry for your loss.  I had twin girls at 25+2 and lost one at 1 day old.  My survivor was 659g, had a grade IV ivh on her left side and small bleed on her right.  I spent the first year not enjoying her as much as I should worrying what her quality of life would be like as we had been told it was a waiting game to see if she would walk or talk.  She is 5 now and apart from being a little small and having a weak core which doesn't affect her in anyway apart from she has to work harder in gymnastics she is just like any other child and is due to start school next week.

I would say try and enjoy your baby but I know it's difficult.  There is another lady on this board has a surviving 23 weeker twin who will hopefully reply too.  

Good luck xx

Hello,

I'm sorry to hear about the loss of your twin. Our son  was born at 27 + 3. There was no space at the local SCBU and he was rushed to a teaching hospital. The first night he struggled with bradycardia and apnia. He had twelve machines helping him to survive. The doctors and nurses were wonderful but like any one in medicine they don't want to build up your hope. I suspect it is just as hard for them knowing that you are desperate for any thing to cling to that would give hope of a future. He had a brain hemmorage so we didn't know if this would impact him. And like many premature babies he had his up days and down days. He needed oxygen all the time he was in hospital. Gradually he got stronger and was moved back to the local hospital. Even though they did not have the technology the doctors and nurses could sense when things were needed. Each little milestone he passed, he drank a mil of milk!, was another step. As we got closer to his original birthday they thought he could come home but his breathing was still not strong enough and we were preparing to get oxygen fitted at home.  But one night he pulled out his oxygen tubes and didn't need them.
It is 15 years later and he is, as any parent would say, a big clever and lovely boy. We are facing all the things you would with a normal teenager. Developmentally he was with his peers and passed the exams for a good school. He is growing all the time.
Do not give up hope. You have been through a lot and you mustn't blame yourself. Despite having tests we never found out what caused his prematurity. It was just one of those things.
The best piece of advice I can give is to deal with each day and milestone as they arise. Every day your child will get stronger as I am sure your love for them will.

Being a parent is all about worrying for the future of your child - it's what parents do.

Please take heart and my thoughts are with you.

Hello Anon,

How are you and B doing? I'm so very sorry that you lost one of your babies - it is absolutely devastating and my heart goes out to you and to your husband.

I had my twin girls at 23+4 back in 2008. Sadly one of our daughters became very poorly whilst in the NICU and we had to take the decision to withdraw treatment. Our surviving twin struggled to come off the ventilator but, apart from that, had a relatively smooth time in NICU. In fact your B sounds very similar - we also had no surgeries, PDA closed successfully without surgery, ROP resolved itself, no NEC. She had an umbilical hernia and gave us all a bit of a scare with a brain bleed and sepsis. But finally came home to us after 128 days in hospital.

Firstly, please be kind to yourself. It is very tough. It really is. Looking back I don't know how I got through it. Having to grieve for one of your babies whilst the other is still so unstable and a long NICU stay is like running a marathon, it is just so exhausting with so many twists and turns and, as you reflect upon in your post, an uncertain outcome. It is understandable to be overwhelmed with fear and panic. I certainly recognise your description of EVERY comment, even those which are only slightly negative, setting off an overwhelming reaction. I remember crying when one of the nurses mentioned she might need to wear glasses which really - given the situation at the time - was a completely ridiculous response on my part!

I think that the doctors do try to prepare parents for a range of outcomes and, due to that, they can sound very bleak. Outcomes for babies born at such early gestations and low weights are very hard to predict and there is a lot of 'waiting and seeing' which can be pretty agonising. If it helps - my daughter is just coming up to seven now, she is at a main stream school, she has no physical disabilities apart from issues with hypermobility in her joints which has some impact on her fine motor skills and speech, cognitively she is totally fine. But she is her own sweet self! I don't know if any of her issues are down to her early birth or if they are just part of her and would have happened anyway.

I don't find your attitude to resuscitating babies at such early gestations cold or heartless at all. Unless you have been there, it is difficult to fully understand the process of treating such tiny babies. Maybe not right now as it might be too close to home but I found the book, This Lovely Life by Vicki Forman a really interesting reflection on the process (she also had 23 weekers twins)

I still feel in my heart that my body let my girls down but, rationally, I know it was completely beyond my control. Please try not to blame yourself. You know how loved and wanted your babies were and you would have done anything within the realms of possibility to protect them.

I really hope you pop back and see my post and I'm sorry that the GP and health visitor have not been particularly useful to you. If you would like any ideas about where to get support I can send a list of things through by PM (this post is already quite long!) but, just off the top of my head, you might find the TAMBA bereavement group helpful? They have a facebook group for parents who have lost one baby, more or all their babies from a multiple birth. It has made me feel less alone and there is always someone to talk to.

Sending lots of love and strength to you, your husband and B. Remembering your dear baby A.