Special care babies

Coping if your baby is in SCBU | Bonding | Practical parenting for special care babies | Going home

A room full of incubators, beeping machines, wires and tubes isn't the start anyone dreams of for their little one. But for six to 10 per cent of newborns, this is their first experience of the world.

"Having my twins in SCBU was the most surreal experience I have ever had and one I would not wish on anyone." poorbuthappy

It may be a neonatal unit (NNU), special care baby unit (SCBU) or, for the most serious cases, a neonatal intensive care unit (NICU), but whichever it is, knowing that it is the best place for your sick baby right now doesn't make it any easier, when all you want is for your baby to be home and well. And until he is, every day is a bit of a battle, or as one mum says: "Rollercoaster is the word."

Coping if your baby is in special care

Whatever the circumstances, it is always a shock to the system to find yourself separated from your baby and dependent on hospital staff for his care. It's natural to feel helpless, 'like a spare part', surrounded by people who know better than you what is best for your baby. "I feel like I'm playing at being mum and they are the real carers," admits one mum. "It is such a confusing time."

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"I'm feeling all kinds of emotions. I'm anxious that he will be OK, but I feel very cautious about celebrating – nothing feels right." amum

You have been through a difficult time, physically and emotionally. You probably aren't feeling yourself and some of your emotions might surprise you. "I felt I hadn't done a good enough job of keeping my baby in my tummy," writes one mum of a premature baby. "I felt it was my first job as a mum, and I'd failed."

But don't be hard on yourself. You are going through an exceptionally tough time. It's important to realise that it's not for ever, and although you think you might not know what's best for your baby right now, he will always need his mother.

"I was forewarned that my baby would be in special care because I was sent to hospital at 27 weeks with pre-eclampsia. When she was in there, I couldn't sit for hours watching the cot. I guess I detached myself from it all; I just felt so guilty. It was my defence mechanism. My body had let me and my baby down, and I blamed myself." amum

Bonding

It's not always easy to bond with a baby who you feel really 'belongs' to the hospital, especially when your emotions are in freefall. "It's hard to parent a baby when you feel that you are being constantly watched," says one mother. "I felt my daughter wasn't mine."

Plenty of mothers admit to not feeling a rush of love, and finding bonding hard: "In the days after the birth, I wasn't worried enough that my daughter was in SBCU. I was actually relieved that I didn't have to look after her having had a Caesarean."

Keeping a diary of what you do and feel at this time can help because guilt and anger are such strong emotions they tend to overshadow any happier moments you might have.

"I found it helpful to keep looking to the next milestone - a certain weight gain, coming out of the incubator, first try at feeding, that sort of thing, as that gave us a series of achievements to celebrate which helped me feel more positive." Penethea

If your baby was premature, you may feel feelings of grief for your 'lost' pregnancy, or anger that you have been robbed of those last few weeks of blissful whalehood. These feelings are normal so don't feel guilty if you feel this way.

"Another thing I also found comforting was to grieve for my 'lost' pregnancy. I loved being pregnant and felt robbed for quite a while. I had this awful nagging feeling and it wasn't until one of the SCBU nurses told me that it was quite normal to grieve for losing my bump early when I wasn't ready was perfectly normal. I cried an ocean that day and that nagging feeling disappeared." Jack2601

Help and support

There is help to be found, for example, at Bliss, the special-care baby charity, which has been a lifeline to many Mumsnetters. A social worker at the hospital should be there to help with practical problems, and most hospitals have trained chaplaincy teams who can provide a listening ear for any patients or carers in the hospital.

Talking to other parents who have been through a similar experience, either on Mumsnet Talk forums or at the hospital, can also be an incredible support.

Practical parenting for babies in special care

Depending on your baby's circumstances while they are in special care, there are things you can do to feel involved. Read your baby's notes every day and ask if there is anything you don't understand; if the answers sound like Swahili, ask again. Write down questions as they come to you and save them for the doctor's rounds – it's easy to forget everything when you are finally faced with a doctor.

Be your baby's advocate

It might not feel like it, but you are your baby's most important carer, and right now she needs you to understand what is wrong and demand that she is looked after and cared for properly. It's never too early to start being a pushy mum. Ask questions and don't be afraid to stand your ground if you think that more or different things need to be done.

"Be aware of all your child's care. If you don't understand, ask until you do. Ask if there is anything you can do. We started with nappy changes while she was in the incubator, moved to washing her, tube feeding, and giving her medication until we did it all, if we were there. I look at her now – recovered from heart surgery and making fabulous strides in terms of health and development – and I believe she has not suffered any ill effects from her hospitalisation. Had she not had the special care and surgery, who knows if she would still be with us now?" eidsvold

Hold your baby

If she is strong enough, 'kangaroo care' is a great way of parenting your baby. This means that you hold her next to your skin, for example inside your shirt – like a baby kangaroo. Some studies have shown that this soothes the baby and can actually improve her heath. No jumping around is required and it's important not to actually box passing nurses.

"Gets loads of kangaroo care. It is the best feeling ever!" Ellac

Feed your baby

Breast milk is the very best thing you can feed a premature or ill baby. Your hospital should be able to help you express your milk, which may be fed to your baby via a tube. "My son was very very ill," recalls one mum. "I threw myself into expressing as it was the only thing I could do to help."

"I was at NICU every day three or four times for every daytime feed and care. I would phone before leaving to ensure that they would not do it without me." Dysgu

Look after your baby

Changing her nappy or washing your baby are tasks that you will be able to do as she grows stronger. Ask and keep asking which jobs you can safely perform.

"It is helpful if you can do as many of the 'cares' as possible whilst your baby is in NICU. They focus very much on routine and measuring and sometimes need to be reminded that it is YOUR baby!" Dysgu

Care for yourself

Make sure you look after yourself too: your baby needs you and your partner to be fit and ready for the day she comes home. Make sure you both eat and sleep, and look after each other. Find someone to talk to if the stress is getting too much.

"Take photos, keep mementos. NICU can be so busy! One day you will cuddle your hulking great boy and marvel that he was ever this tiny." fruitful

Going home

Some parents can't wait to show off their baby, others prefer not to have anyone else involved at this stage. "It was the only thing we could control at the time, so we only allowed parents, grandparents and our sisters to visit him," says a mum whose baby was born at 27 weeks and spent four months in SCBU.

Even on heading home, it can be hard to let go and allow others to have a cuddle with your baby. That's understandable. For now, it's you and your baby who count – everyone else can wait.

"All this has really made me appreciate the little things - just him holding my finger is brilliant." Sticki