At 33 weeks into my pregnancy my son was diagnosed with a condition called Hydrops
Fetalis and bilateral pleural effusion. The Fetal Medicine Unit, Dr Sturgiss gave my son only
20% chance of survival most babies are born stillborn. My son had fluid everywhere in his
body especially in his stomach and chest.
Cian was born at the Royal Victoria Infirmary in Newcastle, United Kingdom at 35 weeks, on
the 19th May 2005. I had a normal delivery. At birth Cian was blue with no respiratory effort.
He was oedematous, bradycardic with poor tone. He was commenced on IPPV with a mask
with poor response by this time I thought my baby has gone. The team didnt give up and
intubated him he required high pressures to inflate his chest. His heart rate and colour
improved by five minutes of age he was then transferred to the Special Care Baby Unit Ward
On ward 35 they were great at keeping us informed he remained ventilated and had chest
drains inserted both sides. A significant amount of fluid was aspirated. He was given
several bolus of normal saline to improve his circulation. Cian also required infusions of
albumin and blood transfusions.
Cian was commenced on intravenous dextrose initially as he was suspected to have
intestinal lymphangiectasia and his inability to absorb feed he was commenced on a
special feed called Monogen (rich in medium chain fats) by day 18. We had to mix a
thickener to this as Cian started to vomit and show signs of reflux apprantly associated with
increase in Respiratory effort.
The fluid in Cians chest was chylous and turned milky when he was given feeds. The chest
drains were finally moved nearly a month after he was born.
Dr. Mike Mckean a Respiratory Paediatrician reviewed Cian he was then commenced on a
drug called Octreotide in the hope that it would prevent or at least reduce further build up of
fluid in the pleural cavity.
Cian was finally taken off ventilation and put onto a machine called CPAP on the 18th June
and stayed on this until the 7th July 2005. We eventually weaned him onto low flow oxygen
and we where relieved to say the least.
Cian was slowly weaned off the Octreotide and a CT scan showed there was still a small
effusion but normal lung architecture. In the last few weeks we were at Newcastle Cian had
episodes of increased Respiratory effort needing increased oxygen requirement but they
think it was due to the vomiting and reflux Cian had developed.
Cian due to the leakage was showing increased volumes of lymphopenia and lymphocyte
count in the pleural fluid. He also had reduced levels of immunogoblins so was therefore
reviewed by Prof Cant, a consultant paediatric immunologist and was commenced on
intravenous immunogoblins and a long term antibiotic.
Cian was finally allowed to transfer to our closed hospital West Cumberland on 25th July
2005. He finally came home on the 30th August 2005 on home oxygen.
In October 2005 Cian had his first hospital admission with a chest infection and increased
Respiratory Distress and in December 2005 was admitted again for RSV a serious infection
which nearly seen him back in Newcastle. We spent every month there after in and out of
hospital. In April 2006 Cian was sent to Newcastle for a Bronchoscopy which revealed one
of his lungs hadnt developed properly there was a whole which could be why the fluid
happened but we dont really know. Dr McKean was concerned and stressed that he wasnt
sure whether this would affect Cian coming off oxygen he just couldnt give us any indication
what the future held for Cian and his oxygen requirement.
In the summer Cian was sent to see Dr Abinun an immunologist from Newcastle General
Hospital. It was he that discovered Cian was immuno-comprimised so that was why he was
catching infection after infection. In June 2006 Cian was started on immunogoblin infusions
Our son had to undergo blood test after blood test, his vaccinations were delayed it was very
traumatic as you probably know.
I would like to take this opportunity to say a big, big
thank-you to the following people:
Dr. Michael McKean Respiratory Consultant at the RVI
Dr. Mario Abinun Consultant in Paediatric Immunology
at Newcastle General Hospital
Prof Cant Consultant Paediatric immunologist at
Newcastle General Hospital
Dr. A Fenton Consultant on Ward 35
Dr. Ward-Platt Consultant on Ward 35
All Special Care Staff in Newcastle and Whitehaven
Jayne Parker Cian's Community Nurse
Dr. P. Moran Consultant Obstetrician in Fetal Medicine
Dr. S. Sturgiss, Consultant Obstetrician in Fetal
GP's Surgery Staff
Finally in the summer of 2007 Cians blood showed signs of improvement and the
infusions could be stopped. To this date Cian still has blood tests to check but touch
wood he is fine at the moment.
In summer 2007 Cian also came off his oxygen and began life as a normal little toddler
getting into mischief it was the best time of our lifes.
The lymphagectasia still affects him sometimes certain things make him have diarrea
but on the whole we are trying to keep him on a normal healthy diet. His growth is great
and he loves fruit and vegetables so that makes life easier. He can now have cows milk
and eat chocolate in moderation.
Cian started pre-school in September and he loves it, hes making friends and I just cant
believe we are here!!
He has an older sister Megan and without her I dont know where Id be she has been the
one to help myself and my husband see light at the end of the tunnel.
Cian is our miracle baby and he fills us all with smiles and laughter and occassionally a
lot of shouting but he is one in a million like all the children on this site !!
For him and other children like him we have to work to highlight this rare condition so that
families like us don't feel on their own.
Love to you all Natalie x
If you want to email me contact me on firstname.lastname@example.org