I have recently signed myself and my not yet born baby up for a research project which is very interesting and thought it would be good to let people know more about it. Whilst I have diabetes and am a diabetes educator and a nurse I still did not know very much about this even though I obviously have a very valid interest in the subject matter. I have even seen things popping up on my Facebook page about it and I have obviously liked the page, but I honestly had not taken much time to understand what the project was about because all of the pics were always of young kids I thought I was not a valid participant. How wrong I was!
The ENDIA, or Environmental detriments of Islet autoimmunity study is a research project which is researching the causes of Type 1 Diabetes so that they can work out ways to prevent it. This is Australia’s largest study into the causes of Type 1 Diabetes. The aim of ENDIA is to follow 1400 children across Australia from pregnancy to early childhood to determine how various environmental factors affect the development of type 1 diabetes.
ENDIA are calling on all families who are expecting a baby, or that have a baby less than 6 months old, that also have an immediate family member with type 1 diabetes to participate. An immediate family member includes the mum, dad or a sibling of the participating baby. As a type 1 mum to be I am an ideal candidate and I am so excited to be a part of this research.
This research is very involved and requires a lot of extra tasks throughout pregnancy and after baby is born but I take sanctuary in the fact that if we need to, we can pull out at any point without repercussion. Obviously this is not my aim in signing up for the research project but with so many changes about to take place in our lives it is good to know that if shit is hitting the fan and we cannot handle the pressure, we can pull out and just focus on keeping the baby alive, as I hear this is the main goal when returning home with a new baby.
A pregnant women can enter the study at any time. Like me, I only found out about the study in my second trimester and I sent an email inquiry saying that I was interested. I was warmly welcomed in and set an information and starter pack. They are also newly looking for Regional participants, of which I am one, so, any person with type 1 diabetes or with type 1 diabetes in their immediate family, anywhere in Australia can sign up and be a part of this huge research project aimed at finally determining what it is that causes type 1 diabetes and how we might be able to prevent its prevalence. What an important opportunity.
So, doesn’t sound too involved at this stage you say. Let’s discuss it a bit further. So throughout pregnancy, depending when you enter the study ENDIA requires samples of blood, urine and stools to measure Vitamin D levels, omega 3 fatty acid levels, markers of inflammation, products of your metabolism and markers of infections. These are required at 3 months, 6 months and before birth. They also require saliva samples from myself and my husband in order to measure our genes and swabs collected from my elbow, nose and mouth to look at infections and healthy bacteria that are normally present in my body. Similarly, they will be recording weight gain during pregnancy and whether the participant encounters any complications through accessing private or public records which are held at the hospital I am attending. They will be recording my Hba1c throughout pregnancy and I will need to complete lifestyle questionnaires at 3 months, 6 months and before birth and at subsequent time points with the child following birth. There will be a diet questionnaire in my last trimester and again at 3-6 months following our child’s birth. After our new baby has come into the
world, during his first week of life, they will require a sample of breast milk within the first few days; these may also be collected every 6 months for the duration that I breastfeed.
So, that’s all just by the by and besides the point really if you have diabetes. I don’t really care about doing extra blood tests and I am a nurse as well, so I am not really fussed with doing the extra tests either. They have sent out a large pack with a secure medical freezer device that I will send back to them via Toll when I have completed all the samples. The one tricky thing is that the samples generally all have to be collected in the same day and sent back to the facility on the same day so it certainly does take some planning and preparation. Especially since Toll need to be contact 24 hours prior to when you want to have things picked up. I can definitely make it happen though!
On the other hand, there is what is required of your new born child. Which is pretty much the only reason why enrolling into this research project was a little bit difficult because it becomes hard when you don’t even know this person at all, this little thing that my husband and I have created, yet, we are going to submit him to numerous extra tests early in his life and throughout his childhood.
A blood sample will be required from baby’s cord blood (placental blood vessels) in order to measure his risk of type 1 diabetes. This will also be used to measure antibodies to the insulin producing cells. In the first few days following birth, on top of working out how to catch all of midget’s urine and stool samples within the confined location of the nappy, I will have to collect a urine and stool sample for testing, as well as an elbow swab. This will have to be done regularly at 6, 12, 18, 24, 30 and 36 months of age, a total of 6 times in three years, that can’t be so bad. I will need to collect a swab from his mouth as well, in order to measure other genes that increase or decrease his risk of type 1 diabetes. At these time points his growth will also be measured using his length or height and weight. On top of all this, a blood collection will also be required 6 monthly, only a small amount of blood is required, measuring less than 3 teaspoons.
These blood samples will be used to determine whether our boy has developed antibodies against the insulin producing cells in the pancreas. Other factors including antibodies that are markers of Coeliac disease, vitamin D levels, omega 3 fatty acid levels, markers of inflammation and infection, and products of our child’s metabolism will also be measured.
In combination with this our child’s food intake will be measured and other lifestyle factors during his first three years of life. This will be taken from a home record by me originally and then through questionnaires once he is eating food on a regular basis. On this home record I am required to note how many breastfeeds he is having a day, when he stops breastfeeding and when he commences on solid foods and as he gets older, what foods he is eating. Following our baby’s first birthday we will no longer need to keep a food diary but will be asked to do a 24 hour food recall on three occasions from 12 to 24 months. After his second birthday a food survey will be completed at 24, 30 and 36 months of age.
There will be no real benefit to myself, the baby or our family by participating in this research. However, if, during the research he develops antibodies to the insulin producing cells, which increases his risk of type 1 diabetes, we will be invited to consider any intervention trials that are being conducted in Australia at the time. With blood sample collection we will also be informed if he has antibodies that develop in coeliac disease, diabetes associated antibodies and vitamin D levels.
At first, I was unsure if I wanted the exposure to all of this information, I didn’t know if I wanted to know things like if my baby is low in vitamin D or if he has the slightest chance of developing type 1 diabetes or coeliac disease because he has the antibodies that put him at risk.
Did I want to know this?
Would this change anything about the way we raised our baby boy? Of course there was always the option that I could tell ENDIA I did not want to know the test results unless they definitely needed to be acted upon but, if my kid is getting all of these tests I am going to be curious to know the result if it is in any way detrimental.
So, whilst I don’t want to know, I also do want to know. The human mind is clearly a complex place! My husband has been supportive from the start and has been quite interested in participating in the study as well which is always helpful. So off we go down this road. I think if it can help a future generation to understand more about diabetes and where it comes from we will be very happy participants. And hopefully through all of this prodding and poking we manage to raise a child who doesn’t mind the odd test here and there. Wishful thinking maybe but you have to look for the positives in situations to get the best out of them!