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.

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.

PREM milk bank is 2 years old

I’m not sure if they had an offical celebration, but the PREM human milk bank at King Edward Memorial Hospital in Perth recently turned 2 years old. finisterre.minti.com

Last year they held a first birthday party and invited all the babies who had benefitted from donated milk, including my daughter Talia. It was only a small gathering, but a big event for us as Talia was only 6 weeks corrected and I vary rarely took her further than a few blocks from our house at that point.

The Perth PREM Milk bank celebrates its first year

I was aware of the milk bank’s existence before Talia was born. I must have read about it when I visited KEMH for an antenatal appointment, and I remember thinking it would be nice to be able to donate milk to help other mothers. I had no idea that I would end up on the receiving end!

My milk came in very slowly, and without the assistance of medication would never have been enough to sustain a baby. However, before the medication kicked in, Talia’s requirements, minimal though they were, outstripped my feeble supply. One afternoon I received a call from the NICU asking if we would be prefer to use formula or donor milk. We had no hesitation in accepting donor milk, knowing it is much better for babies in almost any circumstance, and particularly when the baby has an immature gut. Talia received donor milk for about a week before my own supply caught up and I was able to take over myself.

I have read articles in magazines and online where women react to the idea of giving their milk to another baby (or having their baby drink another mother’s milk) with revulsion. However I can’t imagine they would respond that way if their own baby really needed that help.

The irony is that in the not-so-distant past, it was quite common for women to share their milk, without any worries about disease (which is carefully screened out in the donor milk bank). A lady I know, now in her 60s, told me that when one of her own children was just born she had abundant supply and would go to the hospital nursery and pump - and they would use her milk to feed all the babies in the nursery!  How times have changed.

12 month corrected developmental review report

Babies born at KEMH under a certain gestation and/or weight are assessed by hospital paediatricians at term, 4 months corrected, 8 months corrected and 12 months corrected. The first three assessments are fairly short but the last one is longer and a written report is sent out afterwards. Here is ours:

DEVELOPMENTAL REVIEW OF:
NAME: Talia
DATE OF BIRTH: 20/03/2007 EDC: 20/6/07

SEEN IN.-THE KEMH DEVELOPMENTAL ASSESSMENT CLINIC ON 25/06/2008
Talia was seen for developmental assessment today as part of the neonatal follow up programme. Talia was born at 26 weeks gestation weighing 855gm and is now 15 months of age equivalent to 12 months corrected age. Neonatal details are shown on the discharge summary. Features of note included: Chronic lung disease requiring supplemental oxygen and CPAP for a long time. Normal cranial ultrasounds, no IVH, no retinopathy of prematurity.

RECENT MEDICAL HISTORY
Talia has been healthy with no hospital readmissions since she was initially discharged. She is seen regularly by ophthalmology and they have no concerns. She has also been seen in audiology for hearing testing - there has been some middle ear Eustachian tube dysfunction and she is due to be reviewed again for hearing testing. Immunisations are up to date. Health is otherwise satisfactory.

DEVELOPMENTAL PROGRESS
Talia has demonstrated developmental delay across all skill items at each of her developmental reviews, however she is beginning to make some considerable gains and her parents are pleased with her progress. She has now been crawling on all fours for about a month and did not ever commando crawl. She pulls herself up to standing and is cruising around the furniture and will walk when she is led with fingers. She does not yet walk behind a trolley toy and is very reluctant to climb up any steps or pull herself up over a ledge or onto a sofa. Hand preference is not yet clearly established. She claps hands in imitation but is not yet waving ta ta or pointing at objects of interest with her index finger. She can pick up small objects with a bilateral pincer grip. She does not yet use any words specifically apart from possibly cat and does not say mama or dada. She, however, responds to her own name, enjoys music and singing but does not vocalise to herself with this. She does not consistently shake her head for no. She is normally a very placid and happy little girl. She is not particularly affectionate, however plays interactive games and helps with dressing. She fingerfeeds herself and can drink from her own sipper cup, is not yet using a spoon. She sleeps right through the night and has two short daytime sleeps.

ON EXAMINATION
Talia’s height was 70.1cm (3rd-10th percentile), weight 8.56kg (10th-25th percentile) and head circumference 46cm (50th percentile).Talia is now well established on the percentile chart and tracking along the percentile lines.

A Griffith’s Test (Revised) was carried out, with the following results:
A Locomotor 31 - 10.25 months
B Personal / Social 35 - 11 months
C Hearing / Speech 26 - 9.5 months
D Eye / Hand Coordination 31 - 10.75 months
E Performance 31 - 11.25 months

Age Equivalent 10.5 months

During testing Talia was beginning to demonstrate concept of object permanence and roll a ball in reciprocal play. She currently drops a cube for a third, clicks bricks together and is starting to put blocks in and out of containers in play. She made attempts to play with the formboard puzzles but was not able to complete these. She was trying to replace the bricks back in the box and demonstrated normal fine motor dexterity.
Neurological examination shows no evidence of focal neurological signs or asymmetry. She has normal muscle tone and power but reflexes were difficult to elicit. Parachute response was symmetrical.
General examination of cardiovascular, respiratory and abdominal systems showed no abnormality.
Normal female genitalia. No birthmarks or scars of note.
Vision was assessed using Stycar mounted balls and she followed diameters down to 2mm suggesting normal visual acuity.
Hearing screening was carried out using visual reinforcement audiometry and this produced prompt responses on either side at 25dB level suggesting normal auditory acuity. Tympanic membranes and Tympanography were not done. Dentition was normal.

At just 12 months corrected age, Talia is making satisfactory developmental progress following her extremely preterm birth and low birthweight. I think she would benefit from involvement of Play and Learning and understand that she has also been referred onto CDC Physiotherapy for monitoring of gross motor skills in recent months.
As part of the neonatal follow up programme Talia will be seen on a regular basis until school age and the next anticipated review is at 2 years corrected age at the State Child Development Centre. I would be happy to review Talia again in 6 months to monitor her developmental progress should there be any concerns in the meantime.
DR XXXX Developmental Paediatrician

Happy one year corrected Talia!