‘I JUST DON’T WANT SOMETHING LIKE THIS TO HAPPEN TO ANYONE ELSE.’

Maternity hospitals have guidelines and protocols for the highest standards of neonatal care, and for the sensitive imparting of difficult diagnoses—good practice is only real when those guidelines are carefully followed. Mary de Paor

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Mary’s fourth pregnancy wasn’t straightforward from the start. She experienced bleeding in the eleventh week, but the maternity hospital reassured her that the baby was alright. Later on, blood tests showed an unacceptably high white cell count, but again she was told that the baby’s heart was good, and that she needn’t stay in hospital. Mary availed of the combined hospital care programme—at the local clinic, the hospital’s outreach doctor had done ‘mini-scans’ during her regular anti-natal check-ups, but the maternity hospital did not do a scan, despite a request from her GP toward the latter stages of the pregnancy. A month from her due-date, the clinic nurses said that the baby’s head was ‘down’. That Thursday night, her waters broke, and her partner John drove her to the maternity hospital, some 80km from their home. By Friday afternoon they thought they might send her home to wait for delivery nearer full-term. However, late that evening it was decided to perform a Caesarean section, perhaps because there seemed to be little movement from the baby who was in breach position. Mary contacted John, who was on the way home, and he turned the car around and to return for the birth.

A baby boy was delivered—he was beautiful and healthy-looking. But as the doctor briefly gave him to Mary, he said ‘I think we have a Downs baby.’ Nothing more. John was asked to wait in the corridor while operating-room procedures were completed, and baby Zak (who weighted over 6 lbs. despite being five weeks premature) was taken to the special care unit.

Mary and John were both shocked and bewildered after the birth and the devastating diagnosis of disability. Mary was left alone on the delivery trolley for what seemed a very long time, before being taken to a private room. She was in a state of turmoil—worried about the baby, and about her partner’s feelings. After waiting on a bench in the corridor for a while, John was eventually brought to her room. It was nearly midnight—they hadn’t slept for two nights. None of the staff came to talk with them. John phoned both sets of grandparents, who visited them in the early hours of the next morning.

Mary says she felt almost like she was being punished—being isolated in a private room. She would have preferred to have the company of other mothers in a ward, rather than being alone with her thoughts. The baby was in the special care unit. The hospital staff may have felt that she needed some private time with her family—but they didn’t ask her, then or later, nor did they make use of that privacy to talk with Mary and John.

Mary unfortunately missed the hospital social worker’s Saturday rounds, because she was in the special care unit with the baby. A nurse gave her a packet of information on Down Syndrome that the social worker had left for her. During her five days in the hospital, Mary saw the social worker only once for a short conversation; she remembers her as being very pleasant.

In the special care unit, Mary hesitantly approached one of the hospital staff: ‘Are you a doctor?’ ‘Yes’, he said, but he wasn’t in charge of the baby’s care. However, he looked at the chart and told her that Zak seemed to be doing very well, and that his ECG showed no signs of heart damage.

On another occasion, the consultant came through the Unit with some students. She heard him giving them some details about Down Syndrome—but he said nothing to her.

Baby Zak stayed in the hospital for two weeks after his mother was discharged. Both parents visited him often in the Special Care Unit and they were able to feed him. During one of those feeds, a nurse wrote something on the baby’s chart. John saw that the wrong time had been noted on the chart for a feed that was not due for another three hours. He was understandably worried that the baby might miss his next feed as a result, and he mentioned it to the Ward Sister. Although their concern was brushed away (‘Why were you reading the chart?’), John and Mary felt that they were treated differently after that, and that their complaint was resented. Up to that time they hadn’t been given any indication when the baby could go home, but he was discharged—rather abruptly they felt—the next day, Friday. They did not see any doctor prior to leaving the hospital with Zak. The Sister said that she would contact the local Public Health Nurse, who would then call to see them. Also, she said, the results of the chromosome test to confirm Zak’s diagnosis would be available within a few days.

The district nurse didn’t call to Zak and his mother at all the following week. John’s repeated calls to the hospital failed to elicit any information. Increasingly anxious, Mary eventually called the Public Health Nurse’s office herself- They were surprised—and apologetic—that they had received no notice of Zak’s birth or disability from the maternity hospital or from Community Care. This was nearly two weeks after the baby was discharged from hospital. The Public Health Nurse visited Mary and Zak the same day; she telephoned the hospital, who then faxed on the public health referral form. (The hospital social worker had, more than a week earlier, appropriately notified the early services coordinator from the learning disability service in their area.)

In order to get the chromosome test results, again they made several telephone calls to the maternity hospital, and were told they would ‘look into it’. After about five weeks, a doctor did ring back and told John that, yes, the test results confirmed that Zak had Down Syndrome (as, of course, they already knew). No satisfactory reason was given for the delay in informing them of the test results. The doctor’s speech was strongly accented, and he went on at some length about the various forms of Down Syndrome. Over the telephone, John had difficulties understanding the doctor’s strong accent and his explanations. Eventually (he says) he just stopped listening.

At Zak’s six-week check-up at the hospital, he was weighed, and the paediatrician briefly checked his eyes and hips. Thankfully, he appeared to be thriving. John and Mary had a copy of the Guidelines for the medical management of children and adolescents with Down Syndrome in Ireland (see Down Syndrome Ireland’s website: www.downsyndrome.ie) and they expected Zak to receive a more thorough health check—including neonatal hearing screening and a second ECG to confirm the absence of a significant heart abnormality. They were told that a follow-up ECG might be done three months later—in fact, they had to make an appointment for it themselves.

Zak is now several months old. He is alert and gaining weight, looking around at his family and reacting to the bird-sounds of the mobile above his cot. Both Mary and John are obviously delighted with him. But in the first days after he was born, when they were both devastated, they had to work through their emotions. Just at the beginning, John felt he couldn’t even look at the baby. He had known a neighbour with a handicap but, he says, ‘You never think about a Down Syndrome baby.’

Mary has a relative who works with adults with learning disabilities, and she knew a bit about Down Syndrome. The hospital’s booklet, which she read from cover to cover, raised many questions in her mind. When she got home she read everything else she could get her hands on. Would Zak have a heart problem? What special care might he need? Who could she talk to?

At no time during Mary’s stay in the maternity hospital, nor during baby Zak’s further two weeks there, did a doctor or counsellor sit down with Mary and John to discuss Zak’s diagnosis or their questions and feelings. Bits of information were given to them when they asked specific questions, but they never had the chance to talk fully with anyone. They were given casual ‘bits’ of reassurance along the way—again when they made a specific query—but they never felt that their parental concerns, or their baby, were of real interest to the hospital professionals. John comments that he felt, on his many hospital visits, that the only persons who took a genuine personal interest were two filipina nurses in the Special Care Unit and the young girl on the catering staff who always offered him a cuppa and asked how baby Zak was doing. It wasn’t that the other staff were not good at their jobs—but it seemed to John and Mary, at a particularly anxious and vulnerable time for them, that the staff had a disappointingly uncaring attitude. John feels now that he can’t trust the people [professionals] on whom he had expected to rely.

Mary had no complaints about the care she received during her three previous deliveries in the same hospital. Sadly, this time she and John were left with nagging questions: Did some of the hospital staff react defensively, and dismissively, toward them because they had made a complaint about what they considered to be an improper procedure? Or could it be that the hospital staff were uncomfortable with baby Zak’s Down Syndrome—to such an extent that they were unable to provide the appropriate level of care to him and his parents? Why did the doctors not appear to follow fully the Down Syndrome medical management guidelines.

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