Alix & Antonio

Alix was expecting her first child. He was born after a very long labour at 40+ weeks. It was discovered that he had a congenital diaphragmatic hernia for which he needed surgery.

Alix was pregnant with her first child. She had an uneventful pregnancy and went into labour at 40 weeks. She had a very long labour and when her son was finally born, he was covered in meconium. A resuscitation team examined him and took him away for tests in the neonatal intensive care unit (NICU)*. Shortly after he was born, when Alix had recovered somewhat, she and her husband were visited by a large medical team, including the pediatrician who told them that their son had a congenital diaphragmatic hernia* and would need to have surgery. As he had been born in a general district hospital, he needed to be transferred to another hospital that had a specialist team of pediatric surgeons.

Once in the specialist paediatric surgical centre, the baby was cared for in NICU until he was stable enough to undergo surgery. This took over 10 days during which time he was very unwell. But eventually his condition stabilised and he was able to undergo the surgery he needed to repair the hole in his diaphragm. After a few days of recovery, he was transferred back to the general district hospital where he was born, and then finally home. At the time of the interview, he was 9 months old and progressing well.

* 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.

* Congenital Diaphragmatic Hernia (CDH)
A hole in the diaphragm, the sheet of muscle that separates the chest and abdomen.

At one point Interview Alix and Antonio’s son was not doing well, and doctors considered sending him for very specialist ECMO* treatment. They appreciated how the consultant gave them the information.

Once their son was strong enough for surgery, the surgeon explained what she planned to do, and asked Alix and Antonio to sign the consent form. They were happy he was finally going for surgery.

Alix and Antonio received a call very early one morning. They feared there had been a setback, but actually their son had been transferred out of NICU and was ready to come home.

Alix and Antonio found it very frustrating to see their son go through surgery and then suddenly take a step back because of problems with his breathing.

Alix and Antonio were stunned to be watching an emergency playing out in front of them. It was not the script they had planned.

Antonio was taken to the NICU to see where his son was being cared for, before being sent back to look after his wife.

Alix and Antonio described how their experience on NICU could be dictated by the different ways that nurses on duty dealt with their son.

Alix and Antonio’s son was diagnosed with Congenital Diaphragmatic Hernia (CDH) at birth. It was scary and overwhelming to hear the news of his condition and be told that he was going to be sent to another hospital.

For Alix and Antonio it was confusing and scary to hear such bad news. The doctor was very precise about what would happen next, and went to try and find a hospital they could send their baby to.