Nicky

Nicky was expecting her first baby. He was born very early, aged 24 weeks and developed complications that required bowel surgery.

Nicky’s son arrived unexpectedly and very early, aged 24 weeks and 3 days. He weighed 700 grams and was immediately taken down to the neonatal intensive care unit (NICU)*. He was stable for a few days but then started to develop complications. He was on a ventilator to help his breathing and developed digestion problems. His abdomen became more and more distended and doctors decided that he needed surgery. He was in a general hospital so needed to be transferred to a hospital that had specialist paediatric surgical facilities.

He was transferred and Nicky and her husband were able to stay in a hospital charity house on the hospital grounds to be near their son. Doctors were concerned that he had developed a condition called necrotising enterocolitis (NEC)* and would need a section of his bowel removing. They met the surgeon who explained what she was going to do. When the surgeons operated they found that his bowel was blocked with curdled milk, and there was no NEC, which was good news. However, he did not recover well and developed repeated episodes of sepsis (infections). Eventually doctors worked out that he was reacting negatively to the milk he was being fed. Giving him a different kind of milk, that did not contain cow’s milk, improved his digestion and he was eventually able come home, aged 4 and a half months.

* Neonatal Intensive Care (NICU)
A unit for critically ill newborn babies and infants who need the highest level of nursing and medical care. Babies in NICU often require support for their breathing. Those undergoing major surgery will often be looked after in a NICU.

*Necrotising enterocolitis (NEC)
NEC is a serious bowel condition affecting very young babies. Tissues in the intestine become inflamed. Babies can become critically ill and surgery may be required to remove sections of the bowel that are affected.

Nicky said she really appreciated the clear diagrams the surgeon drew for her. It helped her understand, and be able to translate it for her family.

Age at interview 39

Age at diagnosis 39

Nicky said she was wary of where she looked for information online, and recommended relying on the doctors and nurses looking after your baby for information.

Age at interview 39

Age at diagnosis 39

Nicky’s son needed to go in for surgery urgently, so her husband wasn’st there. The transport team transferred him and gave her an idea of timescales.

Age at interview 39

Age at diagnosis 39

Nicky’s son was born prematurely and developed necrotising enterocolitis (NEC). At 10 months, she was still taking him to at least one appointment a week. She was looking forward to knocking a few of them on the head.

Age at interview 39

Age at diagnosis 39

Nicky was very isolated when her son was in hospital and only her parents and partner were allowed to visit.

Age at interview 39

Age at diagnosis 39

Nicky described the odd hiccup in communicating the care plan for her son, but on the whole communication was great she never had any extra questions because she’sd been given so much information.

Age at interview 39

Age at diagnosis 39

Nicky found reading other people’s stories too hard in the early days when her son was still very unwell.

Age at interview 39

Age at diagnosis 39

Nicky took weeks to build up her milk supply for her premature son. She fashioned a DIY bra to make it easier, so she didn’st have to spend so long away from her son.

Age at interview 39

Age at diagnosis 39

After yet another setback, Nicky started to lose her faith in her son getting through. She rang the BLISS helpline and had counselling to help her cope.

Age at interview 39

Age at diagnosis 39

Nicky’s premature son was transferred to a hospital closer to home, which was good news, but actually visiting him everyday was a logistical nightmare.

Age at interview 39

Age at diagnosis 39

Nicky and her husband prepared to follow their son to the specialist hospital. They knew they were in for a long haul.

Age at interview 39

Age at diagnosis 39

Nicky remembers the date when her son had his first really bad day. NICU staff stopped his intravenous feeding and were talking about the possibility of NEC.

Age at interview 39

Age at diagnosis 39