It's too late, but I feel I need answers

[Midori1999]

I gave birth to my twin girls, Megan and Imogen at 23+5 in April 2010 after a very difficult pregnancy. Megan didn't live very long, but they managed to get Imogen into NICU and she was doing really well, much better than they expected.

Imogen died at 9 days old of a pulmonary haemorrhage. At the time we declined a post Morton as she was so tiny and we felt she had been through enough. Plus, we felt it wouldn't tell us anything we didn't know and it probably wouldn't have.

However, I have two things that are playing on my mind and I don't think I can get any closure from them.

The first is that the day before Imogen died her ventilator tube had slipped too far down into her lung. This is something potentially fatal to such a tiny baby. I didn't mention it as a possible cause at our review appointment with the NICU doctor, as I didn't want it to seem like I was trying to apportion blame. However, whether this is a possible cause of her death is really playing on my mind.

Secondly. I was on the blood thinner clexane after the birth and expressing my breast milk for my daughter, which she had tiny amounts of. I was told at the time that it is safe to breast feed whilst on clexane. However, I have since found out that you cannot donate breastmilk to the UK milk banks if you are on clexane as they say:

"The anti-coagulant medication clexane (enoxaparin) and tinzaparin (Innophep) shouldn?t appear in the breastmilk of a mother who is injecting it, as it is such a large molecule. It is poorly bio available and therefore the amount passing into breastmilk is unlikely to be absorbed. However the potential risks to a baby on a NICU mean that, until further evidence is available, mothers using clexane (enoxaparin) should not donate breastmilk to a milk bank until at least 48 hours after they have stopped the medication. Milk bank staff should check with donors whether this medication was used and if so, carefully assess when the mother stopped taking it."

So, of course, now I feel like make the medication was in my breast milk and caused a problem, maybe combined with the ventilation tube.

I don't know how to even get answers to my questions about these things, or even if there's any point in trying to do so.

It would be the girls's third birthday this April and I am finding it all very hard. I don't talk to anyone about it in real life, although I do mention the girls in conversation.

[Cookingupastorm]

I am so sorry to hear about your daughters. It must be so hard. You know that most babies, esp multiples, won't survive at 23 weeks even with the best care in the world. That said, it is very important you get your answers to get some peace, why not write to the NICU and ask for an appointment with the consultant to go through some questions you have. Hopefully they'll help put your mind at rest.

[spanky2]

I agree. I am sure in my non medical training that a tiny bit of milk wouldn't make any difference . I think it is your grief making you feel like this . Could you mark their birthday by doing something nice? I am sad for your loss. I am sure in that there was nothing more you could do.

[TheAccidentalExhibitionist]

Midori, you've been through such a lot, I'm so sorry for your losses and completely understand your need to get all the answers you can.

I would suggest you contact PALS they are the NHS patient advice liaison service. They would be the normal first port of call and can arrange meetings with the consultant.

Very best wishes

[chipmonkey]

Midori, we've spoken before. I lost my baby daughter to SIDS shortly after we took her home from hospital. She had been born at 28 weeks but seemed absolutely fine. We did have a Post Mortem as her death was unexpected.
I had my final check up with my obstretician before the PM results came out. I mentioned that dd had a nosebleed when she died and he suggested that it could be a pulmonary haemmorhage as it was very common in premature babies. Now, as it turned out, she didn't have a pulmonary haemmorhage but if he said that, it must be fairly common?

The other thing is, that milk which can't be donated to another baby is not necessarily unsuitable for your own baby. I got ten units of blood when I had dd and if I had wanted to donate breast milk to another baby, I wouldn't have been allowed. But it was what kept my daughter alive as long as she lived. But generally the benefits of using a mother's own milk outweigh the risks when it comes to premature babies. Had Imogen had formula, then that would have increased her risk of necrotising enterocolitis, And donated milk is heat treated so loses some of the benefits of fresh milk. The milk you gave her was probably the very best thing she could have had.

My bereavement social worker/counsellor told me that if at any time, I wanted to set up a meeting with the hospital where she was born and discuss her care with the consultants, that she could set that up for me so I assume that could be done for you too? The fact that she didn't have a post-mortem shouldn't affect that at all, what you would be discussing would be Imogen's care and the possible risks to her life.

to you, I know what it's like to want answers and not know if you'll ever get them.