Verity’s Story

Verity was born at 30 weeks in January 2011.  Her birth was a huge shock to us as we were on holiday with our 18 month old son at the time.


On the second night of the holiday I started to get pains and generally feel ‘something was wrong’.  Luckily I followed my gut instinct and went to the local maternity hospital in Bury St Edmunds.  There it was discovered that Verity was extremely poorly (suffering from foetal bradycardia and hydrops fetalis) and I was rushed straight to theatre for a crash caesarean section.  There was not even time to go and tell my husband who had taken our son for breakfast!

Hydrops is a condition that occurs when large amounts of fluid build up in the tissues and organs causing extreme swelling.  It has a high fatality rate, something we were very glad we did not know until she was out of immediate danger.  The hydrops was putting a strain on her heart causing the slow heart rate (bradycardia).  There are many possible causes for hydrops, and although Verity was tested for almost everything possible, the cause has never been found.

Verity only needed assistance breathing (CPAP) the first 24 hours.  Fortunately I’d been given steroids to mature her lungs at 26 weeks as I’d had several bleeds during my pregnancy due to a low lying placenta.   Her birth weight was 2.18kg, but this dropped to 1.75 kg after a few days as the excess fluid drained from her body.

After 6 days in Bury St Edmunds Hospital, we were transferred to the Royal Berks.  Leaving her in hospital by herself for the first time was very difficult.  In Bury St Edmunds I had been staying on the maternity ward as a patient myself, and this meant I could be with Verity on the special care baby unit all the time, leaving just to eat and try to sleep.  However I had now been discharged from hospital and I also needed to spend some time with my son who was missing his mummy.

Initially Verity was on IV fluids, and on day 3 a small amount of my milk was introduced.  On day 10 the IV fluids were stopped and it felt wonderful that she was just being given my milk. In the first few weeks Verity required light treatment for jaundice, blood transfusions for anaemia and antibiotics for infections.  All of these are common for premature babies.

After two weeks in an incubator she was transferred to a “hot cot” (a heated cot).  It is quite an emotional moment when this happens as suddenly they feel more like a ‘real’ baby as you can touch and talk to them more easily.  Life fell into a pattern of me splitting my time between home and the hospital while my husband had to return to work.  I’m not sure what we would have done without the amazing support of our parents, friends and neighbours who looked after our son, cooked us food and did our shopping and washing!

We felt Verity was progressing really well and started to rush around preparing for her to come home, however then her progress seemed to go backwards.  She started to suffer from apnoeas, which caused quite dramatic desats (blood oxygen desaturations).  Scarily this would happen up to several times an hour.  As she did not respond to the usual treatments she was transferred to the John Radcliffe in Oxford for further tests.  It turned out she was suffering from reflux, and the apnoea episodes were finally brought under control with omeprazole, domperidone and me on dairy and soya free diet.

Finally after a total of 13 weeks and 1 day in hospital we were able to bring Verity home for the first time.  She had to be kept attached to an apnoea monitor and we had a cupboard full of prescription medication, but now our family was together at last.

At 9 months Verity came off her reflux medicine, and at 1 year we reintroduced dairy and soya into her diet with no further problems.  During her first winter we did end up with a month long stay on Dolphin Ward with bronchiolitis and pneumonia, and she required home oxygen for 6 weeks afterwards.  However her second winter was problem free.

Verity has an ASD (a hole between the left and right heart chambers).  This is very common in premature babies as it is the hole that normally shuts just after birth.  Because of this we attend heart clinic and she will have an operation at this summer to close it (amazingly this is done by keyhole surgery).

verity2At times if felt we would never leave Buscot Ward, especially when you see so many babies come in and then go home and you are still there.  We could not have done it without the fantastic support of all the staff on Buscot. Verity is now a happy and healthy 3 year old who has just started preschool.  If you met her you would never guess the dramatic start to her life.