INHA marks World Prematurity Day with focus on premie adults
Wednesday, 19 July, 2023
Mandy Daly is cofounder of the Irish Neonatal Health Alliance (INHA), which works to reduce the incidence of preterm births and to empower families affected by prematurity in Ireland. She speaks about this work ahead of World Prematurity Day, November 17th.
The story of Mandy Daly’s advocacy for preterm babies and their families begins with the birth of her own daughter Amelia at 25 weeks plus six days gestation, weighing just 1lb 12oz.
It was October 8th, 2006 and her baby wasn’t due until January when Daly suffered a placenta abruption aboard a flight, a condition that could cost the life of both mother and baby.
Amelia was delivered by emergency caesarean section in Dublin’s Rotunda hospital later that day. The tiny infant would remain in the NICU for almost three months before Daly and her partner could finally bring her home.
“The INHA started simply as a support group for families because in 2006 there was no way for families to bond together to understand what was going on. And for me, I needed that connection with the healthcare service but also with other families to help me navigate the really difficult journey in the neonatal unit. Not to mention what happens when you go home.”
From its humble roots as a family support group, the INHA has grown into a large national organisation representing the estimated 4,500 preterm babies born in Ireland each year.
That number, which includes multiples, is “not decreasing. Globally, it’s certainly increasing. One in ten babies internationally is born prematurely”.
The reasons for this are “multifactorial. I don't think anybody can point a finger to what the actual underlying causes are because there are so many”.
One factor is fertility treatments leading to multiples delivered before 37 weeks’ gestation, the time at which babies are considered to be full-term. Another is maternal age; “Some mums are older and that’s another risk factor.”
In the US 15% of babies are born preterm because their mothers had preeclampsia, an extremely serious condition that leads to the deaths of 50,000 mothers and 500,000 babies worldwide each year. Daly is part of the AI_PREMie team at UCD, which is working on the development of a blood test that will use artificial intelligence to help understand the safest time to deliver babies when their mothers have preeclampsia.
“I'm the patient and public involvement [PPI] partner bringing the patient voice - the family voice, the infant voice - to the table. That’s a really important factor when designing a research study because you want to make sure that your research outcomes are impactful for families and patients going forward to the future. What they've done in AI_PREMie is embedded the PPI voice into every single one of their work packages throughout the entire duration of the study.”
She believes it is crucial for lab-based researchers to meet the people whose lives may be affected by their work and dedication.
“I think that sense of reality helps researchers to focus. It steers them towards outcomes that actually are going to be meaningful and impactful. So many infants die and so many moms are compromised as a result of preeclampsia. It is such an important area that needs addressing sooner rather than later. Early screening would be also so important. A lot of parents who come to our organisation after they've had their baby as a result of preeclampsia say, ‘I wish I had known more. I knew nothing about it.’ So we are embedding that education piece at the very heart of that research study to ensure that it is going to be effective, it's going to be impactful and lives are going to be saved.”
There can be lifelong consequences of being born prematurely, including sight, hearing and feeding challenges and intestinal disorders. Daly’s daughter Amelia has chronic lung disease.
Is there anything that expectant couples can do to lessen the risk of their baby being born prematurely? Daly is one of the authors of a research paper describing how preterm births fell dramatically in the first Covid-19 lockdown period, when women were no longer, in many cases, working, commuting, leading busy lives.
Is less running around the answer?
“That’s easier said than done,” says Daly.
“ I think for me, the greatest thing is actually empowering families about what can happen during pregnancy. I think there's an enormous lack of awareness amongst families with regards to high risk pregnancy, what are the risk factors, what are the symptoms. ”
She welcomes more screening in early pregnancy to “try and identify those small biomarkers that can actually signpost to the fact that there are going to be problems later in the pregnancy”.
The obstetrics community does not wish to frighten families unnecessarily in the early stages of pregnancy by flagging a list of things that could potentially go wrong.
But Daly believes “there is a happy medium” and she urges pregnant women to raise with their GP any concerns, “no matter how silly you think they are. They might be very small, early indications that something is happening and then the medical team can take appropriate action”.
The INHA will mark World Prematurity Day on November 17th with a series of events, including a symposium focusing on adult preemies.
“ We rarely gather data about them; they are rarely followed up. And we know from research that this cohort may have significant health challenges as they get older. We really want to shine that light on them this year. "
Listen to the (opens in a new window)podcast. For more information, see (opens in a new window)www.inha.ie.