Last week we celebrated our daughters first birthday, an awesome experience, still trying to figure out what happened to the last twelve months!
As some of you already know our daughter came into this world 6 weeks early after a massive health scare affecting mainly my wife’s health. With that and our daughters heart stopping for a short time she was born on the 21/7/12 after an emergency c-section, so serious it was the hospital literally stopped as my wife and my daughter became the number one priority for Canberra Hospital, which is about the same size as Christchurch Hospital in New Zealand.
There was a moment when a number of things collided: my baby’s heart could not be found on the fetal monitor, my wife collapsed walking back from the toilet, an emergency was declared, the bed was lowered, lines were hastily opened to rush fluids in, doctors and nurses came from anywhere and everywhere, I stood shaking in a corner, my wife was rushed out of the room and down to surgery, I was unsure if either my wife or child were ever coming back alive, and I was alone in a massive room completely empty and in silence: nothing has ever been so scary
My wife had something called HELLP syndrome, which is basically pre-eclampsia on steroids. My knowledge until today was that there is a high (25%) chance of it occurring again and that the side effects can be even more severe including stroke and death. For this reason my wife and I long ago decided that we were very unlikely to ever have another child, the risks are too high, even with a higher level of medical support.
Now I said my knowledge until today as I have never undertaken real research until now as I have not emotionally felt able to, even writing this post has me in tears thinking of last July. I have decided to write this post as a chance to force myself to increase my understanding.
So here we go
HELLP Syndrome is: a life-threatening obstetric complication usually considered to be a variant or complication of pre-eclampsia.Both conditions usually occur during the later stages of pregnancy, or sometimes after childbirth. “HELLP” is an abbreviation of the three main features of the syndrome:
As in 90% of cases my wife presented with ‘heartburn’ in the upper right area of her stomach, this ‘heartburn’ was in fact the liver being shutdown.
So to get the technical lingo:
The exact cause of HELLP is unknown, but general activation of the coagulation cascade is considered the main underlying problem. Fibrin forms crosslinked networks in the smallblood vessels. This leads to a microangiopathic hemolytic anemia: the mesh causes destruction of red blood cells as if they were being forced through a strainer. Additionally,platelets are consumed. As the liver appears to be the main site of this process, downstream liver cells suffer ischemia, leading to periportal necrosis. Other organs can be similarly affected. HELLP syndrome leads to a variant form of disseminated intravascular coagulation (DIC), leading to paradoxical bleeding, which can make emergency surgery a challenge.
Once again this was typical of our experience. When my wife was officially diagnosed, around 3pm, the Doctors pushed us to have a natural birth due to the risks of bleeding, so induced us and gave her steroids to help with our daughters lungs. The C-section later in the day was due to the immediate risk to the life of mother and child.
Patients who present with symptoms of HELLP can be misdiagnosed in the early stages, increasing the risk of liver failure and morbidity. Rarely, post caesarean patients may present in shock condition mimicking either pulmonary embolism or reactionary haemorrhage.
My wife was definitely ‘misdiagnosed’ at the start. Thankfully there are no lasting liver problems, or the severe reactions such as seizures, going into a coma or death did not occur.
The only conclusive treatment for HELLP is to immediately induce labour, which they tried with us before my wife and babies vitals collapsed through the floor. Basically the placenta and mother go to war, so you need to separate the two before the placenta wins said war.
So do you have another baby? Well that is an individual choice for any parent/couple/women. For us the answer is no, probably not, this risks are just to high for us. As a husband I never want to go through the risk either losing my wife or having her turn into a vegetive state after a stroke, remember there is no cure or prevention other than having the baby.
What are the risks? With treatment maternal mortality is about 1 percent, that means one in one hundred women die during birth, sorry but that scares the shit out of me. Complications such as placental abruption, acute renal failure, subcapsular liver hematoma, permanent liver damage, and retinal detachment occur in about 25% of women. So yes, there are risks, major one. My wife is much more likely to have HELLP again next time compared to a lady in the general public, some reports are about a 20% chance of it occurring again, not cool!
Is there any long term risks for our baby? Well in short there is unlikely to be, I did find some association to Cerebral Palsy, and I do worry a bit about our daughters early growth matching with tell tale signs of Cerebral Palsy, but hopefully other than that there is little ongoing side effect. The Doctors never seem to be concerned about Cerebral Palsy, it will certainly be something on my mind from today until she develops further. In the short term our daughter is far far below any tables, so she is short, skinny and passing development levels very late. She only started crawling at 11 months. That is normal for prem babies anyway, exacerbated by the fact she showed very little growth inside my wife over the last weeks.
There is a lot of information on the internet for those interested you can find some I have used here, here and here