Top tips from premmie mums

This past year I have been helping produce a newsletter for the website L’il Aussie Prems. I’ve been writing articles which summarise some of the health issues affecting premature babies, and also started the “Prem of the Month” section. Each month we feature a child who was born prematurely and ask the mother about their child’s journey, and for a tip they would like to share with other mums.

Here is a selection of those words of wisdom.

I guess I could say try and “normalise” things as much as possible. So cuddle your baby/s as soon as you can and feed them, and bathe them and just love them, even if they feel tiny and fragile and you are scared to touch them in case you hurt them. They need to know you are there for them from the very beginning. L, June 2008

1) Record as many details of your journey as possible including photos and a diary. And 2) reach out and make friends with other premmie parents. When you are at the hospital you do not feel like a minority, yet when you get your baby home, you all of a sudden feel very alone and there seems to be no-one else around that understands. M, May 2008

They have their own time, own target. Each baby is different and only you know your baby so take each comment with a pinch of salt. They are special creatures and give them as much love as you possibly can… S, August 2008

Take photos everyday while in hospital. While it may not be the happiest time it is amazing to see the difference day to day and is a good way to remind yourself that they are growing. J, April 2008

Don’t ever feel guilty or blame yourself for your bubs coming early. D, September 2008

Don’t be scared to ask for help! Accept offers of help and take heaps of photos as they grow up so fast. Cherish every moment, write a diary - I never did and wish I had with both boys. If your hospital offers professional photos get them done, take their foot and hand prints, have a teddy or something for comparison photos. R, February 2008

Be positive, and take it all one day at a time. J, October 2008

Don’t compare. Its the hardest thing to stop yourself from doing. But all prems are different, so even the same gestational age babies will have different development graphs. Your baby is unique, so just focus on the positives and don’t compare to what other babies are doing. L, November 2008

Take lots and lots of photos - and make sure you keep a copy of them somewhere safe. I lost a lot of photos when my computer died and I didn’t have a backup. Also I wish I’d kept a journal, even if it was brief, because all those vivid early memories which I thought I would never forget are starting to dim now that time is passing and so many new memories are being created as Talia grows. K, January 2008

Quotes published with permission of L’il Aussie Prems.

In KEMH on bedrest

Last weekend a friend from L’il Aussie Prems was admitted to KEMH after her waters broke at 27 weeks.  I went to visit her on Monday.  She was in Ward 5, in a shared room with some other expectant mothers hoping their pregnancies last a little longer.  The nurses were telling them that each extra day “cooking” means 3 days less in the NICU.  I’m not sure if that’s 100% true, but the later born prems do tend to go home sooner, so it’s certainly a good incentive to look after yourself.

Then on Wednesday morning I had a call from a friend I made when Talia in KEMH - a lady whose son was born the same day as Talia, also at around 27 weeks gestation.  She is 25 weeks pregnant with her second child, and was admitted due to high blood pressure.  Then a scan showed a blood clot behind the placenta, and now she has joined the waiting game and is up in Ward 3 - coincidentally in the same bed number as the first friend.

It must be incredibly boring and uncomfortable just waiting around, worrying about an early arrival, missing your family - and both friends have a baby/toddler they have never previously been separated from.  Some mothers end up spending months there.  The hospital runs a craft session to give these mothers something to do, to try and stop them going crazy, but it’s no substitute for being at home.

I only spent three nights in hospital before Talia’s arrival.  One day having contractions, one day worrying contractions might come back, one day of starting to feel confident I might be going home, only to discover Talia was footling breech and I would be stuck in KEMH.  And then the preterm labour started again… and Talia arrived before I even discovered a craft class existed.

National Premature Birth Awareness Week

November 24-30 is Austprem’s National Premature Birth Awareness Week. Their aim is to increase awareness amongst ALL pregnant women of the signs and symptoms leading to premature birth.

I knew absolutely nothing about preterm birth before Talia was born, but apparently around 8% of babies in Australia each year are born earlier than 37 weeks gestation, and these babies have a much higher risk of long term health problems than babies who reach full term. The earlier the baby, the greater the risks.

Like about half of the mothers who have premature babies, I was not in a high risk category - no previous history of premature birth, not having twins or more, no known abnormalities of my cervix or uterus. No illness during pregnancy, no high blood pressure or symptoms of pre-eclampsia.

In retrospect, it was obvious that I lost the plug from my cervix the week before Talia was born, but I didn’t realise what it was at the time. It was just mucous, and I wondered if I had a minor infection but had been unable to get an appointment to see my GP before the weekend. As I wasn’t in any pain, I decided it was OK to wait. Then the cramping started. I looked in my pregnancy book, which helpfully told me that cramping in the first trimester was probably a miscarriage, and cramping in the third trimester was probably the onset of labour. It didn’t say anything about the second trimester.

I rang KEMH on a hot Saturday afternoon and asked them if I should be worried. They asked if I had a back ache, blurred vision or nausea. I didn’t. They said it was probably nothing, but I might as well come in to be checked, just to be on the safe side. My husband was away and I was only going to sit at home and worry about things, so I grabbed my handbag and got in my car. No thought of packing an overnight bag. No idea that I would need more than 2 hours parking. No clue that my life was about to be turned upside down.

The scary thing is that if I’d lived further away, already had a child to care for or something important to attend, I might not even have bothered to go that afternoon. I might have waited until later - and it might have been too late for steroid injections. I might even have lost my baby. Fortunately I trusted my “mummy instinct” even when I knew so little about what was happening.

So here is the information in a nutshell. If you have any of the following symptoms of premature labour - call your health care provider or go to the hospital right away.

It’s much better to be safe than sorry. If you really are in labour, the sooner doctors can try to delay your labour or give you steroids to speed up your baby’s lung development, the better your baby’s chances of survival and good health.

Preterm Genome Project

Yesterday I had a phone call from Dr Jennifer Henderson of the School of Women’s and Infants’ Health (University of Western Australia) based at KEMH. She was calling to ask if I would take part in the Preterm Genome Project, which aims to see if there is a genetic reason why some women give birth early.

3 of these 4 people were born early

As it happens, my grandmother also had three premature babies, only one of whom survived (hi mum!) so I have often wondered if my genes played any part in Talia’s early arrival. We will never know for sure, but if it helps another mother in the future to be forewarned and maybe obtain some extra care to help her pregnancy last longer, then it’s definitely worthwhile.

The researchers at KEMH are recruiting 1200 mothers to participate in their study, where they will compare the DNA of mothers who had prems and mothers who had full termers and see if they can find any patterns which indicate that a particular gene or set of genes makes you more likely to have a prem. Later they will take part in an international study funded by the World Health Organisation and the March of Dimes where DNA will be collected from mothers in 5 different countries. If their research is successful, they hope to be able to predict who is at risk of delivering early. It may also help scientists develop new treatments to prevent preterm birth.

Today I went and donated a blood sample and answered some questions. It won’t change anything for me, but hopefully in the future it might help someone else - maybe even Talia.

Immunisations for premature babies

Talia had her 18 month vaccination this week - the regulation shot against chicken pox, but also an extra dose of Hepatitis B vaccine. I hadn’t realised until I opened her purple health record book that morning that there was a handwritten amendment to her vaccination schedule indicating that she needed this additional shot. The nurse at the central immunisation clinic at Rheola Street told me that it was due to her extremely low birth weight and that babies born under 1000g require this extra shot.

Then I found the following information online at http://www.immunise.health.gov.au Common questions on getting immunised I have highlighted the vaccines they mention.

Premature babies especially need the protection of immunisation because they are more prone to certain infections. In general, babies born prematurely receive the same immunisations as other babies. However, very low birth weight babies may have a lower response to hepatitis B and Hib vaccine. The immunisation requirements of a very low birth weight baby should be discussed with your paediatrician and may include having their antibody response checked after immunisation, a delayed immunisation or an extra dose of the hepatitis B and Hib vaccine. As well, premature babies born at less than 28 weeks gestation require an extra dose of Hib vaccine and pneumococcal vaccine.

So Talia’s hepatitis B has now been taken care of, but what is supposed to be happening with regard to Hib and pneumococcal?

I borrowed a copy of the Australian Immunisation Handbook, 2008 edition and the answers (text taken either directly from the book or summarised as accurately as possible) are as follows:

A fourth dose of Hib vaccine is recommended for preterm babies born 28 weeks gestation or earlier, 1500g or less, if they are vaccinated with PRP-OMP. When other Hib vaccines, including Infanrix hexa, are used, no change in the usual schedule is required. [p136] So if you’re prem and in Perth, you don’t need to do anything because the WA government uses Infanrix hexa (DTPA-IPV-HepB-Hib) for Hib vaccination at 2, 4 and 6 months, plus there is a single Hib shot at 12 months.

All preterm babies born at less than 28 weeks gestation or with chronic lung disease should be offered the 7-valent pneumococcal conjugate vaccine (ie the current pneumococcal vaccine for babies and young children) at 2, 4 and 6 months of age (as per the schedule), with a fourth dose at 12 months of age, and a 23-valent pneumococcal vaccine (the older standard pneumococcal vaccine) booster at 4-5 years of age. [pp89, 244-247] So I need to arrange for Talia to have this fourth dose.

Preterm babies do not respond as well to hepatitis B-containing vaccines as term babies. Thus for babies born at less than 32 weeks gestation or less than 2000g birthweight, it is recommended to give vaccine at 0, 2, 4 and 6 months of age, and give a booster at 12 months of age (unless antibodies are measured and found to be in high enough concentrations).[p157] This is the booster which Talia ended up having this week, at 18 months.

In case you were wondering, Talia has never had any problems with any of her vaccinations. She wails indignantly for about 10 seconds, and then the nurse blows a stream of beautiful bubbles and distracts her completely.