Henry’s story

 Henry was born at 28 weeks gestation on 12th
January 2020 weighing 1.3 kilos. At 28 weeks, I had barely started my third trimester,
and actually birthing a baby was far from my mind. George and I had only just begun
to discuss baby names, a possible baby shower and the nursery. To be on the
safe side, I presented to The Royal Hospital for Women in Randwick with what I
thought were a few minor cramps, and was shocked to hear that I was 7
centimetres dilated (and responded, “is that a lot?”, having not yet reached that
part in the pregnancy book!). We arrived at hospital with nothing but the
clothes we were wearing and parked 15 minutes away to avoid the ticketed zones.
I even laughed on our walk in that I expected George to park a bit closer when
I was actually in labour. Not realising that, in fact, I was.

Nothing can prepare you for having to share
your first special moments with your baby with an entire ward of other shell-shocked
parents, fragile sick or premature newborns and an extensive cast of doctors
and clinicians. Holding your baby for the first time 24 hours after they’re
born, with two nurses helping to adjust all the tubes and cables, screw a
syringe of milk into a feeding tube and tell you when to put your baby back in
the humidcrib is so precious and so heart-breaking at the same time. Babies of Henry’s
gestation are unable to perform the suck reflex needed to breastfeed, and as
such I assumed my new role as dairy cow. I strapped myself into a breast pump
every three hours for most of the 9 weeks he spent in hospital, sitting topless
in a small room with multiple other mothers, dignity left at the door. In the
couple of days I spent in hospital before being discharged, I was frantically
searching online for the right kind of pump to hire for overnight expressing at
home – two days prior I’d never even heard of breast pumps, and now it was
mission critical that I find one asap! This is just one of the supports that
LLTF offers; the Breast Pump Program with Medela equips new mothers with a top
of the range breast pump, which is critical in establishing their milk supply.

During Henry’s time in The Royal Hospital
for Women NICU and special care nursery we were surrounded by other families
going through similar experiences. However, when he was discharged, we felt
adrift, seemingly entirely alone in our atypical new parenting experience.
Henry came home in March 2020, just as COVID was ramping up. George’s family
were in South Australia, mine made it back to London just before the borders
closed, and the fragility of Henry’s immune system made us extra cautious in
seeing friends. I was glad to be added to the local (virtual – thanks COVID!)
mothers’ group, and looked forward to some camaraderie, empathy and shared
parenting tips. However, this group was full of mothers of term babies hitting
milestones early and 90th centile babies already growing out of size
1 clothes (Henry was still in 0000). I felt simultaneously desperately sad and utterly
furious that not one of them asked, listened or offered support.

Fortunately, one of the families we had
connected with in the NICU had the forethought to gather contact details from
us and many others before we left hospital. When their little boy was
discharged, this wonderful family took it upon themselves to create a community.
To this day, the parents who shared that NICU journey are the only ones who
truly understand what we experienced, and who can fully appreciate the
magnitude of the every-day victories of our tiny humans.

My advice for those families currently in
the throes of a NICU or special care stay is, if you can, connect. These are
your people. However, I understand it may feel too overwhelming to reach
outside of your tiny bubble and to intrude into the private and often
pain-filled bubbles of those families around you. This is where LLTF’s NICU
Connections support groups step in, both during your baby’s time in hospital,
and after they come home. I believe this community is particularly important for
fathers, and creating a safe space for them to connect is truly invaluable.  

During Henry’s nine week stay in hospital
he received the very best medical attention and we had full confidence that he
was in great hands. However, as parents that were seemingly ‘coping’, our
wellbeing came far down the priority list. Fathers and mothers of premature
babies are prime candidates for post-natal depression, and an organisation like
LLTF that puts its arms around these parents and provides them with support,
connection and some moments of brightness in the darkness, has a hugely positive
impact on these families. During this emotional upheaval parents must also
ascend a steep factual learning curve; quickly familiarising themselves with
terminology, processes, routines and protocols, learning to advocate for their
baby and navigating the unfamiliar and often frightening clinical environment.
LLTF’s Guidebooks provide this practical guidance to parents and extended
family, and help them to forge a better-informed and clearer path through the
wilds of NICU and special care.

The services provided by LLTF make parents
of premature and sick babies feel seen, recognise that their babies are valued,
and acknowledge the trauma of the experience. By supporting these parents, LLTF
can change the lives of whole families in both the short and longer-term.