A Mother’s Story
Interview with a Mum, May 2015
At what stage in your pregnancy did you find out your baby would be arriving early?
From our 20 week scan we were aware that our baby was quite small so my Doctor recommended I took some time off work to rest. After a month off work, everything seemed to be going well, my Doctor did not seem concerned any more and I returned to work part time. At the start of December (around 32 weeks) I was feeling unwell but didn’t think it was anything serious. I had a routine appointment with my Gynaecologist and after testing my Blood Pressure and the protein levels in my urine he told me I had Pre -eclampsia and I was admitted to hospital straight away.
In hospital I was given a steroid injection to help my baby’s lungs mature and medication to help control my blood pressure. After 3 nights in hospital my Doctor was happy with my condition and said I could go home and rest there whilst having more regular routine check-ups. The evening before my next check-up I didn’t feel great and when I saw my Doctor in the morning he immediately said he thought I wasn’t well [one sign of pre-eclampsia can be swelling of the face & hands]. He admitted me to hospital straight away and it was identified that I had HELLP Syndrome, a rare complication of pre-eclampsia. My husband just about had time to get to the hospital and our baby was born soon after – by emergency caesarean – 6 weeks early.
How did you feel when you realised your baby was coming early and what information and support were you offered at this stage?
I had a real mix of emotions: shock, fear of the unknown, upset frustrated. I was so ill that the decision that our baby would be born NOW happened very quickly. Because it was a life and death situation the Doctors did not have time to explain things before the caesarean although my Gynaecologist did keep reassuring me that my baby would get the best care. Once my baby had been born I was happy to be alive but felt guilty about my baby’s tough start.
What about your partner?
My partner was completely shocked. He usually came with me to my Gynaecologist appointments but that morning had just been a routine appointment and he had gone to work that day. When I was first admitted to the hospital I didn’t realise how serious things were so I just called and asked him to come in and visit me. Neither of us realised we would be meeting our baby that day! He came to see me in his lunch break – he hadn’t even told his colleagues where he was going – it was a real shock for him. He arrived at the hospital just in time – as I was being prepared for surgery.
Were you able to visit the Neonatal Unit at your hospital before you gave birth? If so how did this help?
If not what do you wish you’d known before about the hospital’s facilities for early babies?
Because the birth was so sudden we had no time to visit the Neonatal Unit. I have since found out that if my baby had been born a few days earlier she would have had to be transferred to the Maternité at CHL as all babies under 32 weeks are cared for there.
At the Bohler Clinic, the Delivery room is on the 1st floor, right next to the NeoNeonatal ward which means a quick and safe transfer for baby. However, because I was seriously ill, after the caesarean, I was transferred to Intensive care on the 2nd floor.
I was too ill to walk for some time so, the first night, I was wheeled to see my baby in my hospital bed. After that we borrowed a wheel chair from the hospital so I could use that to visit my baby. Parents can visit their baby at any time, day or night, which was important to us.
UK Charity Bliss provides support and information for parents with premature or poorly babies. Their website offers a good overview of the Neonatal Unit including the option to take an on line video tour of an actual Unit.
Which hospital did you give birth at and what was your experience of the Neonatal unit?
We gave birth at the Bohler Clinic. There were usually 4 nurses working in the unit on each shift and one of them always spoke English. The staff were helpful and kind and also offered practical help including providing premature clothes – all the clothes we has bought were much too big.
A Paediatrician would come each morning to check on our baby and provide and update on her progress. There were quite a few different Doctors so this proved a good opportunity to choose our Paediatrician once we left hospital.
There is lots of equipment in the unit: incubators, heated cots, respiratory monitors. Your baby may also be attached to different intravenous tubes and a catheter, to help give medicine and/or food. All the machines and equipment are monitored by the nurses on a central, monitoring system. The equipment takes a bit of getting used to be the nurses can help explain what everything is for.
How long did you have to stay in hospital yourself?
How did your own experiences of birth and your own health affect your feelings and emotions and how you were able to respond to your baby’s birth?
I had to stay in hospital 9 days. Due to the circumstances surrounding my birth I developed a blood infection which made my recovery time longer. It was hard not to be with my baby, especially on the first day as I could not walk and had to be wheeled to visit her in my bed. It was better once I could was well enough to go in a wheel chair. We were able to borrow a wheel chair from the hospital & then I could visit whenever I wanted.
It was a bit strange being in Intensive Care, on a different floor from all the other new mums. I got good care but felt ‘separate’ from all the other new mums.
How about for your partner?
It was difficult for my partner to balance taking care of himself, me and the baby. For the first 2 days he was with our baby constantly because I was so ill. He also had to go back to work for a few days while the baby and me were still in hospital which was tough on all of us.
How easy was it to visit your baby both when you were in hospital and, if you went home first, once you were home?
Parents can visit their baby at any time which was really important to us. Whilst I was in intensive care the nurses were very helpful and would phone me with updates on how our baby was doing. They’d also phone and also let me know if she was sleeping & suggest I have a rest then and come and visit later. Grandparents can also visit between 4-8pm, provided there is nurse approval.
How involved were you and your partner able to be in your baby’s care?
What sort of day to day tasks (e.g. mouth care, nappy changing, bathing, feeding & skin to skin) were you able to perform for your baby in hospital and what support did you get to help you build your confidence?
We had to take full responsibility for our baby’s care from the day following the birth. We changed her nappies, fed her, gave her medication & bathed her. At the start this was supervised by nurses and as time went on we took over full responsibility for our baby’s daily care. The nurses were kind and helpful and we could ask for advice or about any questions we may have. There was usually at least one nurse on shift who spoke English.
Did the hospital support you to learn techniques like ‘comfort holding’ and ‘kangaroo’ or skin-to-skin care?
Yes the hospital was very helpful. When our baby was in an incubator we were encouraged to put our hand in and touch her to comfort her. [This is sometimes called ‘still touch’ or ‘comfort holding’].
The nurses explained that premature babies need a lot of rest to grow. New babies also need regular feeds. Our baby was on a 2 to 3 hour feeding schedule so we were able to take her out of her incubator and hold her for long periods during feeds.
What support were you offered with feeding?
Do you have any suggestions for other parents?
Premature babies often don’t have the ability to coordinate sucking and swallowing with breathing (this develops around 36 weeks) so we had to tube-feed our baby at first.
At the start I hoped to express breast milk so we could feed our baby breast milk. However, due to complications following surgery, I was too ill to do so. When she was ready to move on from tube-feeds the hospital provided special disposable bottles with premature baby sized teats. This enabled us to specifically measure the amount at each feed. This did cause difficulties when we went home as at first our baby would not use any of the bottles you can buy in the shops – we ended up buying quite a selection! This was a very stressful time trying to ensure she got enough milk. I would cup feed her but it was an anxious time & hard work ensuring she got enough milk. As she was very small she would fall asleep during each feed so it would take up to an hour to feed her a tiny amount.
How did the Doctors and nurses help you and your partner understand what was happening with your baby at each stage?
Whilst we were in hospital a Paediatrician visited each morning. During the Doctor’s visit they monitored our baby’s height and weight and how much she had drunk. The nurses were also always there during the day to answer any questions or discuss anything that was on our mind.
Going home is often a time of profound anxiety, as well as intense relief for parents whose baby has been early or poorly. What support were you given to prepare when the time came to take your baby home?
Did you get chance to ‘room in’ or stay in hospital with your baby for a few days before going home to help build your confidence?
We were not given the option to ‘room in’ but we had been responsible for all our baby’s daily care whilst she was in hospital. Even so the transition home was difficult. It was hard knowing where to get support once we were discharged from hospital. Feeding was still difficult and it was an anxious time.
For more information on bringing your baby home see our article on Having a Premature Baby or take a look at this checklist for preparing to go home developed by UK Charity Bliss. You can also download or order a copy of their excellent booklet ‘Going Home: The Next Big Step’ as well as other helpful information on their website.
What ongoing support was available once you were home?
I would advise any parents in a similar situation to make sure they have the Ordinance for home visits from a Sage Femme Liberale (a prescription which entitles you to home visits from a community midwife, to be reimbursed by CNS or your private medical insurance) before they leave the hospital. Because the circumstances of our discharge were unusual our Doctor forgot to give us the ordinance before we left hospital and it made organising our first midwife visit stressful and complicated. The support the Midwife provided in our early days at home was invaluable.
Your hospital can provide you with a list of Sage Femme Liberale or you can find a list of Midwives on the Sage Femme website. When you know your discharge date you can even contact a Midwife whilst in hospital to book a visit for when you get home.
What tips would you share with other new parents to help settle in to family life once baby is home?
Find a routine that works for you. But don’t panic in first few days – all new parents feel anxious and unsure when they take their new baby home and it’s hardly surprising that this may be even more intense if you’ve had the stress and anxiety of your baby arriving early and needing special care in hospital.
We found a noisy environment at home was very helpful. The neonatal unit is very noisy – you are surrounded by monitors and other babies. This means your baby is used to noise and may find it difficult to sleep if things are too quiet at home. Background noise like TV or radio can help. White noise (things like the noise the washer makes or even hoovering. White noise apps are also available) is particularly soothing for many babies.
Sleep is a big concern for most new parents, what have you learnt about safe sleep and helping your baby to sleep well?
We had learnt about safe sleep and the ‘back to sleep’ during our Birth and Beyond antenatal class. This is particularly important for premature babies and the nurses at the hospital were helpful at making sure our baby was sleeping safely. Some of the key things we learnt at the hospital were:
- Do not use blankets, use a sleeping bag
- Always put baby on their back to go to sleep
- Make sure baby sleeps on a firm surface (like a mattress) and never on a sofa or cushions.
- Keep any soft toys or doudous at the bottom of the bed
- Dress baby in appropriate sleeping clothes (like a sleep suit or body)
Lullaby Trust are a UK Charity who promote Safe Sleep messages and support parents who have experienced Sudden Infant Death Syndrome. For more information on safe sleep take a look at their safe sleep guidelines for parents.
Childbirth is full of technical words and jargon. This can be especially bewildering in a foreign country. What phrases and terminology did you pick up that you think it may be helpful to explain to other parents?
The reason our baby arrived early was because I developed HELLP syndrome which is a rare but life threatening condition linked to pre-eclampsia. There is no way to prevent pre-eclampsia or HELLP but I wish I had been more aware of what to look out for. I would encourage all pregnant mums to be vigilant and if they feel unwell to talk to their Doctor straight away. It’s also useful to ask the mother’s side of the family about any previous experiences of high risk pregnancies as conditions can run in families.
Pre-eclampsia – After my experience, I wanted to find out more and also make other new mums more aware what to look out for. Pre-eclampsia is a condition that effects up to around 10% of pregnant women. It generally occurs after 20 weeks gestation. Your doctor usually pick it up at an antenatal check-up if you have high blood pressure and protein in your urine. Signs you may notice at home include:
- Swelling of your face, hands & feet (however, swelling, particularly of hands and feet, can be common in healthy pregnancies too)
- Nausea or vomiting
- Abdominal pain
- Vision disturbance
- Feeling short of breath
It is a serious condition and needs to be treated quickly. It’s likely you will be admitted to hospital where your Doctor can monitor how you and your baby are doing and decide when you will deliver your baby. There is no cure for pre-eclampsia during pregnancy but once the baby and placenta are delivered the disease disappears. This means that mums who suffer from pre-eclampsia usually have their baby early.
HELLP Syndrome – this is a variant of pre-eclampsia. The name explains the condition:
- H (haemolysis, which is the breaking down of red blood cells)
- EL (elevated liver enzymes)
- LP (low platelet count)
It can be difficult to detect but the symptoms are often very similar to those of pre-eclampsia so if you are not feeling right and notice any of the symptoms above speak with your Doctor immediately.
For more information and answers to frequently asked questions on pre-eclampsia & HELLP Syndrome check out Action on Pre-eclampsia.
Steroids – When I was first admitted to hospital I was given a dose of Steroids. These help your baby’s lungs to develop so that if they are born early they are better able to breathe by themselves when they are born early.
Apnoea of prematurity – this is when your baby has irregular breathing (often seen in premature babies as the part of the brain that controls breathing isn’t mature yet). If your baby is on a ventilator it doesn’t matter if they take a pause in breathing as the ventilator will take care of it but if your baby is not on a ventilator and has Apnoea they may be fitted to a monitor or given caffeine to stimulate their breathing.
Hypertension – High blood pressure. High blood pressure combined with protein in the urine is a sign of pre-eclampsia.
For a Glossary of common medical terms take a look at the Bliss website.
What has been helpful to you on your journey as a parent so far?
My Midwife – I would encourage any mum to take advantage of midwife home visits, provided by Sage Femmes Liberales. They can really help to ease concerns.
Check with your Doctor what support you may be entitled to. Contact information for the Sage Femmes Liberales can be found on their website.
Ligue Medico-Sociale – This is a Luxembourg health promotion service that offers similar support to UK Health Visitors. Ligue Medico-Sociale provide drop-in clinics throughout Luxembourg where you can go for a free baby weighing service and advice and support.
For a schedule of visits to Communes around Luxembourg look online.
Well Baby Clinic – A team of English-speaking health professionals and volunteers who provide friendly advice and a range of groups and activities to help new mums get in contact with other parents.
Is there anything else you or your partner would like to mention?
There are a few pieces of advice I would like to share:
- Bring your own blanket to the Neonatal Unit. It feels less clinical and it’s nice for baby to have something of their own.
- There is no way to prevent pre-eclampsia or HELLP Syndrome and it can start quite suddenly so be vigilant and if you feel unwell or notice any of the symptoms above talk to your doctor IMMEDIATELY. Also check your family history for any high risk pregnancies.
- Try not to get too concerned about growth charts and comparisons with similar aged full-term babies
- Ensure you have set up a follow up appointment with your paediatrician before leaving the neonatal unit. It can be difficult to explain the situation to receptionists so if the appointment is already set up it can save a lot of time.
- Mums look after yourselves by focussing on healthy eating, etc.
Further Information – Useful Links
Coping with a ‘high risk’ pregnancy or a surprise early arrival & caring for you and your baby during pregnancy
Bliss: UK Charity for parents of early or poorly babies explains some common reasons babies may arrive early or need special care.
NHS Choices: UK health service web site explains common reasons babies need special care.
NCT: UK’s largest parenting charity explores emotions during pregnancy.
Royal College of Obstetricians & Gynaecologists: The UK professional governing body which also provides a range of informational leaflets for patients.
NHS: UK Health service web site explores the impact of type 1, type 2 and gestational diabetes.
Multiple pregnancies (twins triplets and more)
TAMBA: UK charity providing support and information for parents expecting more than one baby.
Pre-eclampsia & HELLP Syndrome
Action on Pre-eclampsia: Essential information.
NHS Choices: Information on pre-eclampsia symptoms.
HELLP Syndrome: Factsheet on HELLP, which is the medical term for one of the most serious complications of pre-eclampsia.
Maternité Grande-Duchesse Charlotte: The newly-built Maternité (to replace the old) is part of the CHL group of hospitals and boasts a MIC Unit (Maternal Intensive Care).
KannerKliniK: 24/7 Children’s clinic (adjacent to the new Maternité hospital) also provides Neonatal Intensive care.
The Clinique Bohler: This Kirchberg hospital is the largest maternity centre in the Grand Duchy, with up to 2700 deliveries a year.
Centre Hospitalier Emile Mayrisch: Hospital based in Esch-sur-Alzette, the south-west of Luxembourg.
Centre Hospitalier du Nord (CHDN): Hospital based in Ettelbruck.
Bliss: An online tour of a NICU.
NHS Choices: Information for parents on special care, ill or premature babies.
Caring for & feeding your baby
Comfort Holding and Kangaroo Care: Advice for parents on how to provide positive, reassuring touch to premature newborns.
Small Wonders: Programme and online DVD to help support putting parents at the heart of their baby’s care.
Feeding a Premature Baby: Information on every aspect of your baby’s feeding including tube feeding, expressing and bottle feeding.
Tube Feeding: Information on a specific form of feeding premature and sick babies.
Tommys: Pregnancy information and research.
NHS Choices: Information on breastfeeding a premature baby.
Kelly Mom: Popular source of reliable breastfeeding advice.
Words for life: UK literacy charity shares tips for talking and singing to your premature baby.
Bliss: Checklist of things to be comfortable with before your baby comes home from hospital.
Safe Sleep: Guidance from UK Charity Lullaby Trust.
Your baby’s development
Bilan 30: Speech and auditory testing for all children in the Grand Duchy at 30 months.
Birth to Five Timeline: An interactive resource from the NHS to highlight typical developmental milestones from birth to 5.
Bliss: UK Charity supporting parents of premature babies in all aspects of their journey.
Impact on family relationships
Tommys: UK charity funding research and information for parents coping with premature birth, miscarriage and stillbirth.
One Plus One: A UK charity which supports couples to maintain healthy relationships.
Couple Connection: An online resource for couples wanting to work through challenges.
Preemie Help: Online premature birth resource offers some practical tips on coping with common sibling concerns.
Bliss: Information on the next pregnancy following the birth of a premature baby.
Tommys: Your online midwife, offers guidance on what you can do to reduce your risk of premature birth.
Article by: Kate Ensor, who is a coordinator for Passage and a postnatal group facilitator & childbirth educator at the Well Baby Clinic of Luxembourg.
Last updated: Thursday 8th October, 2015