Preparing women with diabetes for pregnancy
A significant number of abnormalities related to diabetic pregnancy occur in the first eight weeks when the baby is developing. So if you are waiting for women to have a positive pregnancy test and appear at ante-natal clinics, you have lost a lot of the opportunity to make a change
Anna-Maria Kirrane (39) believes there is no way she would be on baby number four without the help of a pioneering, pre-pregnancy care programme that women like her can avail of in the west of Ireland.
She faced extra risks on becoming pregnant – to both herself and the baby – because she has diabetes. A lifelong condition, diabetes is caused by a lack of the hormone insulin, a substance made by the pancreas that regulates blood sugar. Type 1 tends to occur in childhood or early adulthood while type 2 usually develops slowly in adulthood.
A native of Inishmor, Kirrane was diagnosed with type 1 diabetes at the age of 19, when she was studying hotel and catering management. She started losing weight and feeling extremely thirsty but there was no history of diabetes in the family.
“When I went home for Christmas my mum took one look at me and said ‘oh jeepers’ and sent me straight to the GP.”
Her condition was identified immediately and she was sent to hospital for a couple of days, where she remembers injecting oranges to practise for self-administering insulin.
“I was quite healthy up to then, so it was a bit of a shock but it was manageable.” Although she soon became well used to monitoring herself and injecting insulin four times a day, the prospect of pregnancy after she got married in 2009 was a “little bit scary”.
It was when attending the diabetic clinic at University Hospital Galway for her annual check-up that she saw a poster advertising the pre-pregnancy care programme.
While “it takes a little of the spontaneity and romance out of the whole thing”, she says with a laugh, she enrolled in the programme when she and her husband, John Kirrane, were thinking of starting a family at their home in Milltown, outside Tuam, Co Galway. “You want to do your best for a new baby and you want to give yourself the best chance.”
The Atlantic Diabetes in Pregnancy programme was developed to try to optimise the health of women with diabetes before conception. The initiative, led by NUI Galway’s Prof Fidelma Dunne, started as a research project into diabetes and pregnancy, funded by the Health Research Board.
“The first thing we noticed was that outcomes for women were very poor,” she says. “We started to investigate why and one of the main factors was that they were not properly prepared for pregnancy and that is when we set up the pre-pregnancy programme.”
A significant number of abnormalities related to diabetic pregnancy occur in the first eight weeks when the baby is developing. “So if you are waiting for women to have a positive pregnancy test and appear at antenatal clinics, you have lost a lot of the opportunity to make a change,” says Dunne.
The Saolta University Health Care Group implemented the programme on a regional basis through University Hospital Galway, Mayo University Hospital, Castlebar and Letterkenny General Hospital in Co Donegal. The research data is now there (see panel on opposite page) to demonstrate its effectiveness not only for improved health among women and babies but also in reducing costs for the health service.
“What we have shown from this programme is that we can reduce congenital malformations in babies, neo-natal mortality in babies that is often related to prematurity, reduce prematurity, and reduce the need for extensive neo-natal care for babies because that is what the HSE counts,” says Dunne.
Scientific evaluation of the programme has found that the average cost of complications for those with diabetes who received standard antenatal care was ¤2,578 more than for those who had attended for pre-pregnancy care as well. The average cost of delivering the pre-pregnancy care is just ¤449 per pregnancy.
Having been adjudged Best Sustainable Healthcare Project, as well as winning the overall trophy, at the Irish Healthcare Awards last November, the programme has built up a convincing case for national implementation.
Considering the lifelong effects of congenital malformations and developmental issues relating to prematurity, for both children and their families, not to mention the economic burden on the health service, you would expect a proven, cost-effective way of reducing these to be embraced. That’s without factoring in the trauma and heartbreak that is avoided for each fewer stillbirth.
But Dunne is not holding her breath for this programme being extended to other parts of Ireland.
“The HSE is not into prevention. It is into treating complications, that is where one has to have a whole mind-set change to implement something like this.”
With the data that has now been produced in research studies evaluating the Atlantic Diabetes in Pregnancy programme, you would expect the HSE to say that is very good evidence, we will implement that, she continues. “But that never happens with the HSE because implementation costs money. That is where we make no progress in the HSE in Ireland.”
Regional change can be achieved in healthcare delivery if you have a very motivated person championing the cause, says Dunne, who is satisfied that this programme is now embedded in routine care in the Saolta area.
Research shows people who most need to attend a pre-pregnancy care programme are often those in rural locations, who don’t have enough money for travel, or who may be of lower intelligence or of a lower socio-economic status, she explains. This is why they focused on bringing the
service to the people, rather than centralising it in a tertiary-level hospital.
“We were trying to provide geographical coverage and be inclusive of all types.” This required training of local hospital staff and ongoing awareness-raising, by sending out flyers annually not only to women attending diabetic clinics but also to GPs who may be the only healthcare professionals caring for those with type 2 diabetes.
Participants in the programme, for which there is no waiting list, also have to be very motivated; a minimum of three months is recommended but most need up to six months. The aim, generally, is to get women’s HbA1c (which indicates their average blood sugar levels) down to or below 6.5 per cent when they are entering the first trimester and evaluation of the programme has shown that the number achieving this has increased from 16 to 33 per cent.
“It is not easy to get to the goals you’re asking them to do,” says Dunne. With an emphasis on the restriction of intake of sugar, the diet can become boring. They are also asking women to test their sugar levels seven times a day, to exercise every day and to reduce their body mass index.
“You are asking them to be super good.” However, an outline of the implications of starting pregnancy when their health is not optimised is persuasive because “the consequences are awful”, she points out.
Women are likely to be motivated enough to reach their best targets by six months and the situation is then reviewed.
“We may say that is the best you are going to achieve and then outline the risk for the pregnancy related to their best target.” It is up to them to decide whether or not they want to proceed with trying to conceive.
Some people make more progress than others on the programme “but every bit of progress has a positive impact”, she says. About one in 250 pregnancies in Ireland is to a woman with either type 1 or type 2 diabetes, not to be confused with gestational diabetes that about one in 12 women here now develops during pregnancy and which, typically, goes away after the birth.
The incidence of all diabetes is on the rise, but particularly type 2 and gestational which are driven partly by weight issues.
Dunne, who is expecting to see this increase cause a lot more issues for reproductive health, outlines three main areas of concern that the pre-pregnancy care programme addresses:
The sugar control of the woman – the higher the levels are for the woman, the worst the outcome.
Use of folic acid – women with diabetes need to take high-dose folic acid, which requires a prescription. “We would generally treat them with five milligrams of folic acid, whereas the folic acid you buy over the counter is 400 micrograms.”
Use of other medications – those used normally in the treatment of women with diabetes may not be good for pregnancy. “A lot of the newer medications for the treatment of type 2 diabetes, which are fine outside pregnancy, are not suitable for pregnancy. This is an opportunity to deal with all of that,” she adds.
The next step towards getting the programme implemented throughout the country is a national audit of the outcomes of pregnancy for women with type 1 or type 2 diabetes. Dunne expects this to begin in February or March, with results collated by the autumn.
“All our colleagues around the country have agreed to participate in that with no monies coming from the HSE,” she says. “This is money I have got in through research that will kickstart it.”
She expects the audit to show geographical variations and hopes the best results can be taken as the norm, with everybody then striving to meet that norm.
Before attending the pre-pregnancy care programme, Anna-Maria Kirrane hadn’t known about her need for a higher dose of folic acid than other women.
“You need to have that in your system three to six months prior [to conception]. They check your iron levels, sugar levels and get you into the routine of checking your sugar levels throughout the day.”
During pregnancy you need to check your sugar levels between five and seven times a day, she says, “to make sure you are keeping on top of the highs and lows as well”.
After six months on the programme, Kirrane says: “I knew my body was ready. I knew I had done as much as I could do.”
It took another four or five months until she became pregnant the first time and she then started to attend the combined pregnancy clinic at University Hospital Galway every two weeks, seeing both the diabetes and gynaecology teams.
“You are sent home with a diary and you record your sugar levels – your spikes, your highs, your lows.
“The weeks you are not present the nurse rings and goes through your levels and if you need to increase or decrease [insulin].” She also had her eyes checked in each trimester.
Kirrane has felt “unbelievably well monitored” throughout all her pregnancies. She attributes being “so blessed” with three healthy children – Tara (five), Aoife (four) and Aisling (two) – and 37 weeks pregnant with her fourth when we speak to this level of care before and after conception.
“If I hadn’t that support and back-up,” she adds, “I probably wouldn’t have had the confidence to go for our fourth child.”
Anna-Maria Kirrane at home with her daughters – Tara (5), Aoife (4), and Ashling (2).