Preeclampsia, Eclampsia and HELLP syndrome.

Beyonce recently shared some insight into the pregnancy and delivery of her birth (link ). It highlighted her experience with what she referred to as ‘Toxemia’. Toxemia is an ‘out of practice’ name for preeclampsia. It may also be termed as PIH (pregnancy induced hypertension) in certain countries.

Preeclampsia affects 5-10% of pregnancies. Most often it occurs late in the third trimester of pregnancy, but it may develop anytime from 20 weeks gestation and in very rare cases, before 20 weeks.

Most cases of preclampsia will result in the birth of a healthy baby because statistically, most pregnant women who develop it will do so in the last few
weeks of pregnancy (34 weeks-40/41 weeks) which is when a foetus is classified as either ‘moderately premature’, ‘late pre-term’ or full term. Their organs and lungs in particular are almost fully developed and they have received much of their required immunities from their mother.

Hypertensive disorders such as preeclampsia account for up to 14% of preterm birth (before 36 weeks gestation).

Preeclampsia accounts for almost 13% of maternal deaths worldwide which translates into a resultant maternal death every 12 minutes in the world.

While these statistics are staggering, many expectant women are not made aware of this potentially life threatening illness. The symptoms themselves may often be mistaken for normal pregnancy related side effects and as a result it can be easy to miss or misdiagnose initially.

Most cases of preeclampsia aren’t initially noticeable because many of them are so easily relatable to normal pregnancy side effects, but a combination of
symptoms or persistant issues should have you seeing your gynae for a checkup.

The most common symptoms are
* headaches;
* blurred vision;
* upper abdominal pain;
* dramatic and sudden weight gain; and
* decreased urine output.

If left undiagnosed, cases of preeclampsia can progress into eclampsia, which can result in seizures or strokes.

But what exactly is Preeclampsia? Essentially it is a combination of increased blood pressure and elevated protein levels in your urine. It may also result in low blood clotting factors, kidney and liver complications. It affects the blood flow to the placenta, often leading to smaller or prematurely born babies as a result of slowed or restricted growth, lower than normal birth weights and increased infant mortality rates. Most commonly, an infant born as a result of preeclampsia or eclampsia is often referred to as an IUGR (Intrauterine growth restriction) baby because of their smaller size and weight.

Another development of preeclampsia and eclampsia which can occur, as the illness progresses, is HELLP (haemolysis, elevated liver enzymes, low platelet count) syndrome. Statistically up to 15% of sufferers of preeclampsia will progress into HELLP syndrome. The global mortality rate for HELLP syndrome is a staggering 25%. Typically symptoms of HELLP syndrome are

* Headaches;
* Nausea, vomiting and indigestion with pain after eating;
* Abdominal or chest tenderness at the base of your rib cage (from liver distention);
* Shoulder pain or pain when breathing deeply (fluid builds up in your lungs which creates difficulty in breathing);
* Bleeding;
* Blurred vision; and
* Edema (swlling) in limbs.

Testing blood pressure and protein levels in your urine are methods to test for HELLP syndrome.

HELLP syndome can also present itself in mothers without the presence of preeclampsia or eclampsia, and in rare occurances may even occur after childbirth.

The only known cures for preeclampsia, eclampsia and HELLP syndrome is child birth and the removal of the placenta. This is not guaranteed to be an instantaneous cure however, many women still experience issues for weeks, months and sometimes years after the birth of their child.

While the exact cause for developing preeclampsia, eclampsia and HELLP syndrome is not yet fully understood, there are certain genetic and environmental factors which likely contribute to the increased of likelihood of developing these or all of these illnesses:

* Your age: teenagers and women over the age of 40 are at greatest risk;
* If you experienced preeclampsia or eclampsia in a previous pregnancy;
* Obesity;
* A history of high blood pressure prior to pregnancy;
* A pregnancy as a result of egg donation or donor sperm insemination;
* Having a mother, sister or close family relative who had preeclampsia;
* Having Diabetes, Lupus, Rheumatoid Arthritis, certain Kidney diseases, sickl     cell disease; and
* Having a multiple gestation (2 or more foetus simultaneously).

There are still many mysteries surrounding the exact causes and contributing factors towards an otherwise healthy pregnancy developing into preeclampsia, eclampsia and HELLP syndrome, including theories of genetic incompatibilities, the body rejecting the placenta, etc.  It cannot be prevented as yet, and the only known cure is delivery.  It can however be monitored and in certain scenarios, proper management can prevent it escalating at a rate which is life threatening to mother and/or child.

Statistically, our story, is a rare occurrence. Yet, I’ve met so many incredible women who have experienced the same journey. Some have their children in their arms, some of their children gained wings, some were too terrified to ever try again and some were courageous enough to risk it all again for the chance to have another child.

Charlotte for us is our one and only after our journey. I developed HELLP syndrome in the middle of my emergency caesarean. I had a dialysis machine on standby, waiting to be connected up to me to save my life. My daughter weighed 3 weeks behind in her weight and faced insurmountable odds of surviving and being a healthy active child one day. My husband faced the risk of losing his wife and child, or being faced with the prospect of raising a medically complex child on his own.

Would I do this all again? No. The risks for me are far too great. I do not believe my body could handle it all again. I do not want my daughter to grow up without her mother if I can help it at all. I do not want to run the risk of placing another child through the pain and trauma of a premature birth.

The survivors guilt is one which is immense. I don’t for a second regret fighting to save Charlotte. But I have tremendous amounts of guilt for doing so. It’s hard to explain, and believe me, I’ve tried, on numerous occasions. When we were faced with the recommendation to terminate her and ‘move on and try again in a few months’ I was beyond devastated, for many reasons. The decision to keep fighting for her may have appeared to many people to be a brave one, for others I know it was seen as a selfish choice. And here’s the thing, I can see and sympathise with both sides of the coin.

Charlotte is healthy, for all our issues with feeding aside, she is a perfect stereotypical happy and healthy toddler who has met all her milestones. In many aspects she appears to be well ahead of some of her peers. But not all stories end as ours has. Many children do not survive, or they live with lifelong complications resulting from severe premature birth, from lung issues, hypertension, cerebral palsy, learning disabilities, heart conditions as adults, minor or severe brain damage and metabolic issues. Charlottes story could have led in so many different directions. I have deep admiration for any parent who has a medically complex child, the road is not paved smoothly, particularly when your childs’ medical complexities are possibly not physically visible to the outside world.

Deciding to fight for her, to give her a fighting chance could have resulted in creating lifelong problems for her. I have days where I feel immense pride in making the right decision to fight for her. There are also days where I remember the look on her face, how tiny and helpless she was, lying in her artificial womb incubator, connected up to dozens of life saving equipment and wondering if I haved saved her, for her, or for my own selfish desires. How much of her pain and suffering was justifiable through my actions and decisions?

It’s a complex thought process, and a dangerous one I think. One which could drive a mother to the brink of insanity. I don’t believe though that there is one simple answer, there is no clear cut right or wrong decision. It’s an impossible decision to make, yet we are faced with having to make it. And either way you look at it, and regardless of the outcome, you will always replay that decision over and over in your mind.

Through all of this though, brave mamma’s across the world face these odds head on, taking any number of risks to fall pregnant and carry their children as far to full term as what is humanly possible.

 

Leave a Reply

Your email address will not be published. Required fields are marked *