Parents’ experiences of neonatal surgery

Joe

Age at interview: 36
Age at diagnosis: 34

Brief outline: When Joe was pregnant with her third child her daughter was diagnosed with an exomphalos* at her 12 week scan. After she was born she was also found to need heart surgery for a rare condition. She was 16 months old at the time of the interview.

Background: Joe is married with three children.

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When Joe was pregnant with her third daughter, it was discovered that it was a triplet pregnancy, but she miscarried two of the babies leaving just her daughter. At the 12 week scan an exomphalos* was detected. Joe was warned by doctors that she might need to stay in hospital for a few weeks after the birth as her daughter would be cared for in neonatal intensive care (NICU)*.

Her daughter was born at 39 weeks and taken to NICU immediately for assessment. Joe suffered a post-partum haemorrhage* and needed a blood transfusion. So she was not able to see her daughter properly for a few days, although the nurse did bring her baby to her for short visits. When her daughter was 5 days old, it was discovered that in addition to her exomphalos, she also had a rare heart condition for which she needed open heart surgery. She had to wait several weeks to put on weight before surgeons felt she was strong enough for the surgery. She was transferred from NICU to a specialist heart unit, which Joe found very distressing. Her daughter was covered in wires and there were many very sick babies around her. She didn’t put on much weight, but at 6 weeks her condition was so serious that surgeons decided that they had to operate, come what may.

The surgery was major, but a success. One of the side effects of her heart surgery was that she was left with a left vocal chord palsy, which means that at the time of the interview, aged 16 months she was not able to talk, and needed regular speech therapy. She was fed by NG tube* for over 14 months and now receives feeds through a peg* in her stomach. The period of time in hospital was very stressful and challenging for Joe and her husband. It was 8 weeks before she could hold her baby without wires and tubes.

Joe’s daughter was discharged at 4 ½ months old, which was a great day. But it was also very stressful and scary for Joe to be home with a 12 year old, toddler and baby with such complex medical needs. She needed several specialist visits daily from various healthcare professionals (including physiotherapists, dieticians and a speech therapist). Her daughter developed gastroesophageal reflux disease which made her recovery take longer, although she was much better once she could sit up. Building the confidence to look after her baby at home was a steep learning curve for Joe, and she said she was a hermit for the first few months while her daughter was really vulnerable to infections. She had the closure operation for her exomphalos at 14 months.

At the time of the interview Joe’s daughter was 16 months old, still fed by a peg in her stomach and not able to eat properly or talk yet. She was receiving regular follow up with dieticians, speech language therapists, paediatricians, and every few months has surgical, respiratory and cardiology reviews.

But Joe felt she and her family are managing to find glimpses of normal family life, albeit one with complex medical needs. Joe was planning to go back to work part-time soon.

*Exomphalos
An abdominal wall defect, that occurs when the baby’s tummy wall does not develop fully in the womb. Some of the baby’s intestines and sometimes other organs such as the liver, develop outside the tummy and are covered by the umbilical cord. 

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.

*Nasogastric (NG) tube
A tube placed through the nose into the stomach. This may be used to drain the stomach contents after surgery or to provide milk when babies are not able to feed fully by mouth.

*Post-Partum Haemorrhage
This is excessive bleeding following the birth of the baby. Most commonly it occurs within 24 hours of the birth and greater than 500mls (approximately one pint) of blood is lost (primary PPH). Secondary PPH can also occur where there is abnormal bleeding from 24 hours to six weeks after the baby is born.

*Peg
A type of gastronomy feeding device, which is inserted into a surgical opening in the stomach.

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