After dealing with CHI for 25 weeks now and researching it in depth... don't get me wrong, I'm no professional but it's crazy the amount of time I've spent reading up on everything I possibly can from websites, blogs, information outlets, books, you name it! I am that annoying person that will randomly start a conversation about a condition you have never even heard of and start blasting you with facts and statistics.
One thing I keep reading about and hearing over and over again is the mistreatment of CHI and the effects this causes; and it's a total shame that by doing ONE thing, misdiagnosing would be halved and mistreatment would not have to happen.
Call me crazy, I believe every newborn should have a mandatory glucose test via heel prick at birth. I could not preach this any louder if I tried... and trust me, it's all I do go on about when I hear of these horror stories which are gradually coming out of the woodwork and into the press. This needs attention.
But babies have a blood spot I hear mums saying... I fully appreciate the importance of the five day blood spot, but I do not think it is enough. Do you know exactly what that tests for? The majority of people I ask have no clue. This mandatory blood spot picks up on disorders such as cystic fibrosis, sickle cell, phenylketonuria, MCADD and congential hypothyroidism which are all extremely important to detect in newborns; however, this screening does NOT test glucose levels so hypoglycemia is not detected so conditions such as congenital hyperinsulinism go undetected; therefore, it isnot treated or it is misdiagnosed and that is when the horrible risks start to kick in. More and more babies are being misdiagnosed, not given the right treatment and some unfortunately dying due to low blood sugar levels (hypoglycemia) - It's not just the brain which can be in danger if left untreated; the heart, blood vessels, kidneys, eyes and other organs can be damaged too. For the sake of a newborn's health, if a heel prick is all it takes then surely more parents would be willing?
I have no idea how glucose testing (BM's) are dealt with anywhere else in the world but in the UK it is not compulsory - in my opinion, it should be. The amount of lives which could be saved or made better, not necessarily of newborns, is beyond worth it.
My local hospital, obviously I can't name names, does not carry out any blood glucose measurement tests unless admitted to SCBU (Special Care Baby Unit) and this goes for many hospitals in the UK too. Tragically, many babies symptoms are not picked up and if symptoms are picked up, it is usually too late - if glucose monitoring was done at birth and monitored if needed then brain damage and even death can be avoided.
I'm continually reading how midwives dismiss mothers requests and concerns too - This article is about a baby who unfortunately died because his mothers concerns were not seen to by a medical professional. The mother raised concerns about her baby's feeding and abnormal crying - she was simply brushed off as being 'anxious'. Any concerns should be followed up by a medical professional , mum knows best! From what I've read, midwives also need more training and equipping in the monitoring of blood sugar levels - what to look out for and how to treat a hypoglycaemic situation. Of course, my opinions do not go out to every midwife out there or every nurse or medical professional and yes some are trained in this but it's happening less and less often by the looks of it and something needs to be done about it. In other cases, even if patients symptoms are being picked up, some are still not receiving the right care and are not receiving the correct treatment - some doctors have not heard of this and it is misdiagnosed in numerous cases if not detected at birth. I got to know one mother at the hospital whose baby had been misdiagnosed, the drs did not know what they were dealing with - for the first ten weeks of her life, her daughter was pumped full of drugs which did not make any difference to the condition but instead made her really ill - thankfully she was transferred and put into the right care in time.
This article is definitely an interesting read; it just proves the point that more needs to be done... brain damage should not be an option for any, otherwise healthy, newborn! I do wonder if the NHS sees this as a problem or not... Glucose is so important to the functioning of our bodies, without it or ketone bodies - what fuel does your brain operate with?
The HI fund are constantly researching and attentively looking for lifelong answers to HI and the problems is can cause. Would you believe that NO research is being done in the UK for this condition and little to none being done anywhere else in the world... simply due to not having the funds. With the correct funds specialist staff could be employed, equipment could be brought and research carried out - this may be a rare condition but plenty of babies are being born with glucose issues, whether they be transient or persistent.
All from one heel prick at birth, so much can be identified, especially if the baby is symptomatic, and if necessary then the right diagnosis and treatment can be given. It's so sad that this is even happening in our time. This is just so important, I can't believe how many deaths are caused by this and hardly none make it to the media or public knowledge! It won't go away unless something is done.
I can't fault the medical team that dealt with my daughter: I feel the staff listened to me, they knew I had issues with how my daughter was, especially overnight and they checked it out. This is how it should be! I can't even begin to imagine not having her here today, especially if it was just down to negligence.
Any more children I have with Andrew (as Orlaith is hyperinsulinemic on the grounds of a confirmed paternal heterozygous mutation in the ABCC8 gene) has a one in four chance of suffering from hyperinsulinism too. I already have a birth plan for my next child - the baby will be heel picked at birth, no questions asked; no risks are being run this time.
I'm proud to say I'm hyperinsulinism aware, are you?
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