A Dunedin newborn baby with a rare skull condition has a brighter future thanks to an "international joint effort" which helped her get to the United States for urgent surgery. | Source: Otago Daily Times
WARNING: This article references child death
Meena and Sam were looking forward to welcoming their second child into the world this year. Sadly, in early December, Leo arrived at 22 weeks and did not survive. Te Whatu Ora told the family the outcome may have been altered had Meena been given an earlier appointment. She speaks to Katie Harris about the nightmare she is still living.
There is a belief in Hinduism that when a person passes away their spirit is reincarnated.
Cremation and scattering ashes, according to many who follow the religion, is the fastest way to release the soul from its physical body so it can begin the cycle of Samsara.
This has weighed on Meena, who is Hindu, ever since she lost her baby.
“I will never be able to send his ashes away. My mum says I have trapped his spirit, but I just can’t do it,” she told the Herald while fighting tears.
“I have to have my child next to me, and I said to my husband when I pass you put my child with me and that’s where he goes.”
It was a standard Friday, another weekday with a medical appointment that would bring the then-pregnant Meena* and her husband Sam* one step closer to meeting their baby boy, Leo*.
But during an ultrasound that morning, the sonographer realised Meena’s cervix was shortening and sent her to the hospital.
Meena said she told the doctor she was experiencing leakage and pelvic pressure, but no physical examination was done at the hospital.
Te Whatu Ora alleged this was because no specific symptoms were raised with the doctor, who also spoke to an on-call consultant, before recommending a course of progesterone pessaries and sending the couple home.
That doctor then booked Meena in for a review at the pre-term birth clinic two weeks ahead.
Te Whatu Ora would later admit that — had this appointment been earlier _ the outcome may have been different.
“We are sorry this was not the case,” the agency wrote to the mother.
Te Whatu Ora declined to respond to Herald questions about the case and despite a privacy waiver from the patient, the agency said it did not believe it was appropriate to comment on her health information when an invitation was in place for her to meet with clinicians and leaders.
Pre-term birth clinic
December 5 was the last full day of Meena’s unborn child’s life.
It was that day, in the appointment at the pre-term birth clinic, that doctors found her cervix had opened and the fetal membrane was exposed.
In response to a complaint from Meena about her care, Te Whatu Ora operations manager Naomi Knight said there was a discussion about the findings and implications of early gestation at the time.
“Risks of infection, rupture of membranes, pre-viable delivery and pre-term delivery were discussed along with options of conservative management or rescue cervical cerclage [sewing up the cervix]. The consequences of potential infection were also discussed.”
Knight said because it was clear Meena wanted everything possible done to prolong the pregnancy, they decided to proceed with the emergency cervical cerclage.
At no stage does Meena recall hearing that her condition could be fatal to baby Leo.
She alleges no one explained to her what the consequences would be if it didn’t work, only telling her that the baby would come out.
“I’ve done research, babies at 22 weeks onward can survive,” she told the Herald.
After the surgery, Meena felt relieved and believed her child had been given a “few more weeks”.
“In the morning I was talking to my best friend, who is also not in New Zealand, and I said if baby makes it to 28 weeks we will be okay.”
Sadly that day a test confirmed her fetal membranes had ruptured and an infection was present, Knight said.
“Documentation shows a discussion was had about the implication of rupture of membranes, infection, and the need to remove the cerclage and deliver [the child].”
The bereavement room
Meena knew the stitches were coming out. She knew the baby was coming.
But it wasn’t until she had been moved into the Manaia room, and was about to start pushing, that she said a label gave away how dire her situation was.
“My husband was on the other side of a bed and there was a phone there and the phone had bereavement room written on it, that’s how we found out.”
Meena still struggles to speak about giving birth after learning she had been placed in that room.
Getting words out about the worst moments of your life can do that.
“I was screaming, I was crying, I was so upset. I was distressed, it was terrible. And then [a nurse] told us our baby was still alive. It would have been better if he had just passed away.
“We had to just watch him die and we had to keep watching the nurse coming in to check if he still had a pulse.”
“We watched him gasp for air. We were hopeful he was still going to make it, that someone would come and see that he was still alive.”
Knight said Te Whatu Ora was “deeply saddened” to learn the couple had discovered the significance of the Manaia room on their own and said the agency regretted Meena felt the information provided to her was insufficient.
“It can be challenging to gauge the appropriate level of information to provide to each individual, considering their unique expectations.”
The teddy bear Meena and Sam's baby's urn is kept in. Photo / Mike Scott
Speaking generally, Women’s Health Action general manager Isis McKay said distressed people often don’t take in all the information provided to them.
“Using euphemisms or tiptoeing around delicate conversations doesn’t help anyone in the end. We need to be sensitive, we need to be respectful, but we also need to make sure that that communication is happening and that it’s effective and that information is getting through.”
She told the Herald there was no one way to communicate, and some people do feel too much detail is unnecessary.
There is an “urgent need” to ensure everyone working in health has undertaken enough communication training, she said.
“We all understand our health workforce is under immense pressure at the moment, they’re incredibly stretched and perhaps in some of these instances there is a breakdown in communication.”
When it came time for the couple to leave the hospital, Meena said no staff helped them carry their belongings, or their dead baby, to their vehicle.
Knight said they were again disappointed to read of their distressing discharge and journey to their car with no support provided by the hospital staff.
“Your feedback has highlighted important gaps in orientation for midwives and nurses who are new to providing care for whānau in the Manaia room and has identified that this is an area we need to improve on with our staff.”
She doesn’t know how to when she believes her child would have lived if she had received more treatment for her shortening cervix earlier.
Wanting to raise awareness about cervix shortening is partly why she came forward with her story, in the hopes other women don’t suffer in the same way she has.
“Even my daughter, she’s been wanting a sibling for so long. Everybody’s dream was crushed.”
In the months since her son’s death Meena has filed complaints with Te Whatu Ora and the Midwifery Council.
Following her complaint, Knight said the agency has recognised the need for clearer management protocols and is preparing informational materials to raise awareness about pre-term pregnancies.
These include information leaflets for people who have had preterm birth and information for people in the Manaia room.
Meena’s complaint to the Midwifery Council has been transferred to the Health and Disability Commissioner, who is assessing her complaint.
A letter from one of the consultants who looked after her also acknowledged an examination and transvaginal ultrasound earlier than they saw her would have been advised.
In declining the Herald’s request for comment, the Te Whatu Ora spokesperson referred to the letter and said it indicated the care provided was in line with clinical guidance and based on clinical indicators reported.
“Unfortunately, tragic events can and do still occur unexpectedly, despite the treatment and care provided. We know this does not diminish the grief for families and our sympathies remain with all those affected.
“The individual and her partner have recently experienced a significant trauma. We are deeply sympathetic for their loss and believe it is important that we remain sensitive to their best interests at this time.”
Meena isn’t happy with the hospital’s response and remains haunted by the hope she still had as her child took his dying breath, by the boy she never saw make it out of the hospital bereavement room.
Instead of a baby, Meena said she’s been left with an urn.
*Names have been changed to protect their identity
Katie Harris is an Auckland-based journalist who covers social issues including sexual assault, workplace misconduct, crime and justice. She joined the Herald in 2020.
Where to get help
Contact your midwife or GP if you have one
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