Support for parents

Home
Support for parents

How will I feel?

You may feel worried because your baby might not look like you expected: premature babies can look very different to those born at term. They can have fragile red skin covered with downy hair (called lanugo). However, even babies born more than 12 weeks early have eyelashes and fingernails. They can cry, open their eyes and respond to sound and touch.

You might find it encouraging looking at the photos of other babies who have been on the unit, as you can see how quickly they progress.

During your baby’s stay, you may experience a range of emotions. It is not uncommon for parents to feel frightened, shocked, upset, angry, cheated, confused, helpless or out of control. You may be scared that your baby may not survive. You may also find it hard to bond with your baby until you know he or she is out of danger. These feelings are all normal and there are no right or wrong feelings.

It may help to talk to your nurse, or to the counsellor attached to the unit, about these feelings. You can contact the counsellor on (01273) 696955 and ask the switchboard to put you through on ext 7928, or you can ask your baby’s nurse to arrange for the counsellor to contact you. You can speak to the counsellor even after your baby’s discharge.
A mother’s story

“I was 24 weeks pregnant, expecting twins, when I was told I was in labour. The shock was overwhelming and I feared that I would lose them both. I was transferred to Brighton because they had the special care needed for such small babies. Tara Jayne weighed a mere 17oz and Katie Ann, 2lbs 2oz. Katie Ann was expected to pull through, but she didn’t and the grief was unbearable. I felt like I was in a time warp; everyday life was suspended until we all came to terms with her death. Having lost one, we were forever fearful that Tara Jayne would not pull through. She was incredibly tiny, with wires and monitors plugged into her tiny frame and we hoped that she felt no pain. She was 146 days old when we took her home and she weighed a healthy 5lbs. The six months of living in a vacuum have taken their toll on all of us; our two other children are very protective of Tara Jayne. I’m hopeful that my experiences will help other people in similar circumstances to cope during such an emotional time.”

— Sarah Hyde
Another mother’s story

“Our son Lewis was born at 33 weeks and was transferred to the Intensive Care Unit at TMBU. My husband and I arrived in floods of tears and were shell shocked when we first entered, but soon the monitors, wires and alarms became normality. We were advised to expect good days and bad but we weren’t expecting such a roller coaster journey. Lewis was constantly monitored and was making great progress. But, after a week, he deteriorated and was moved back into ICU. Lewis needed immediate attention and was resuscitated by the TMBU staff who provided outstanding medical care and dedication to keep him alive. Over the next few weeks he grew stronger and well enough to come home. We found talking to each other, the other parents and staff hugely beneficial to keeping us strong for Lewis. During our time on the unit, we cried and prayed more than we ever had before – sometimes we cried more on the good days, because every small step of recovery reminded us of the miracle of our little boy. The doctors and nurses who looked after Lewis (and us), were truly inspirational and we will be eternally indebted and grateful to them.”

— Nicola Austin
Why has my baby been born early?

Not all pregnancies go smoothly. Every year some babies are born prematurely or preterm – that is before 37 completed weeks of pregnancy. Preterm is only used to describe those babies born more than three weeks early. 40 weeks is the ideal time for a baby to spend developing in the womb.

We do not always know why a baby is born preterm, although we do know that the chance of an early birth is higher in some situations, for example, where a woman is carrying a twin or triplet pregnancy.

The outcome for a preterm baby depends largely on how early he or she is born. The overall outcomes for premature babies are good. However, there are risks to being born too early.
What other sources of information and support are available?
The Early Birth Association is a support group for the parents of premature and sick babies. It is run by a number of parents who have previously had a baby on the unit.

The EBA hold various fundraising activities during the year and receive donations from friends and families of babies that have been on the unit. The money raised is used to buy equipment for the unit, from clothes, sheets and blankets up to incubators and monitors.

There are also a number of social events arranged by the EBA. These allow parents the opportunity to meet one another and for the children to enjoy themselves. A quarterly newsletter keeps members informed of fundraising and social events. If you would like to be kept informed please leave your name, address and telephone number with reception who will pass it onto the EBA.

The EBA holds a regular coffee morning on TMBU providing a chance for parents on the unit to meet others and to talk with members of the EBA. Please ask your nurse about the next EBA coffee morning or contact:

The Early Birth Association
c/o 52 Fairway Crescent, Portslade, East Sussex, BN41 2FL
www.earlybirth.co.uk

Rockinghorse is intrinsically linked to the Trevor Mann Baby Unit as the charity was set up in 1967 by Dr Trevor Mann, who recognised there was a real need for additional resources, to improve healthcare services for sick children and babies.

‘Working together with Rockinghorse, we can aim higher and go further for the children of Sussex. They help make the difference between a difficult experience and a good experience. Something our children deserve.’ Dr Ryan Watkins, Consultant Neonatologist, the Trevor Mann Baby Unit

As the official fundraising arm of the Royal Alexandra Children’s Hospital (the Alex) in Brighton, and a vital supporter of the TMBU, Rockinghorse raises money for life-saving medical equipment while ensuring that children and babies are treated in an environment better suited to their needs.

Whether it is donating incubators to improve the outcomes for premature babies, purchasing items for new wards – such as the Children’s Emergency Department and redesigned teenage rooms – or providing toys and colouring books to distract from painful treatment – Rockinghorse aims to be there for each and every child and their family.

The charity does not receive any government funding and so relies on the generous support of individuals, community groups, companies and trusts.

For more information, please call 01273 330044 or visit www.rockinghorse.org.uk

The neonatal service has a Parent Forum which meets quarterly. It provides an opportunity for parents who have experienced one or both of our units to help us develop the service and the way in which it operates. The group helps coordinate the parent feedback programme, contributes to the development of parent information available on our units and advises us on new policies and procedures that we introduce.

We welcome any parents who would like to become members of the forum.

For further information, please contact Clare Morfoot on the Trevor Mann Baby Unit, Sue Robinson on the Special Care Baby Unit at Princess Royal Hospital or Ryan Watkins, Consultant Neonatologist.

BLISS (national charity for premature and sick babies)
2nd & 3rd Floors, 9 Holyrood Street, London, SE1 2EL
Telephone: 020 7378 1122
Family Support Helpline Freephone 0500 618140
Monday – Friday, 10am – 5pm
www.bliss.org.uk

TAMBA (Twins and Multiple Birth Association)
2 The Willows, Gardner Road, Guildford, Surrey, GU1 4PG
Telephone: 01483 304442
Freephone 0800 138 0509
www.tamba.org.uk

Group B Strep Support
PO Box 203, Haywards Heath, West Sussex, RH16 1GF
Telephone: 01444 416176 (manned 9am – 3pm)
www.gbss.org.uk

Contact a Family (charity in support of children with disabilities)
209–211 City Road, London, EC1V 1JN
Telephone: 020 7608 8700
Helpline: 0808 808 3555 (10am – 4pm, Monday – Friday)
www.cafamily.org.uk

Amaze (Brighton support group for parents of children with special needs)
Community Base
113 Queens Road, Brighton, BN1 3XG
Telephone: 01273 772289
www.amazebrighton.org.uk

NCT (National Childbirth Trust)
Alexandra House, Oldham Terrace, London W3 6NH
NCT Helpline: 0300 330 0700
Breastfeeding line: 0300 100 021
www.nct.org.uk

Keyworker Scheme – Support for families whose children use four or more specialist services
Seaside View Child Development and Disability Centre
BrightonGeneralHospital
Elm Grove
Brighton BN2 3EW
Tel: 01273 265825
Fax: 01273 265824
Email: [email protected]
www.brighton-hove.gov.uk/content/children-and-education/childrens-services/services-disabled-children-and-young-people

Sussex neonatal care

We are at two sites: Royal Sussex County Hospital and Princess Royal Hospital.

Read more
Contact us & map

Brighton: 01273 523450
Haywards Heath: 01444 448733
Email: [email protected]
Read more
Please make a d♥nation

→ Justgiving.com
We welcome your donations to help us equip our unit to the highest standard.
Donate now