When becoming a mother gives you Sheehan Syndrome: My Story!
I always wanted to be a mother, In fact it’s one thing I dreamed of for many years. If I could I would have more children, John and I would love to adopt. Motherhood to me is the greatest role I could ever have. However for me becoming a mother came at a price and that price was Sheehan Syndrome – damage to the pituitary part of the brain!
A Long Labour
I had a 3 day labour. I’ve never talked about the birth before. Just thinking about it gives me a sickening feeling inside. I guess I’m still not over it 9 years later. Thinking about labour gives me some level of PTSD for sure and so I do avoid it whenever I can.
However my experience was one of joy, pain and long term brain damage. So what happened? Well, during pregnancy I had a few serious issues and eventually after a long labour I developed Sheehan Syndrome, alongside other conditions. Here is the story of what happened.
A Car Crash Whilst Pregnant
The first being a car crash, Whilst driving we were in a car crash. Someone backed into us. He did not have any wing mirrors and his car was illegal. I ended up bleeding and was taken to hospital.
I was lucky my baby survived the crash. I stayed in hospital for a while until I was well enough to return home. However I was constantly unwell.
Bed Rest During Pregnancy
I developed gestational diabetes and later Cholostasis in pregnancy. I had itchy skin, my liver levels were out of wack and all I remember is the Doctor at the hospital saying, “there is a chance of stillbirth”. It freaked me out and caused a great deal of anxiety. I also had to have a lot of bedrest during pregnancy due to all the complications.
Whilst being on bedrest in hospital I stayed on a ward with other pregnant Mothers who were also too unwell to be at home. Every few hours Nurses would come and check my blood pressure and monitor my babies heartbeat.
There were quite a few mums to be stuck on the ward and we had craft sessions where we knitted little booties for our babies.
There were also mums on the ward who had lost there babies. It was something you kind of knew was happening and it made me feel sad and guilty.
I was sad for the mothers who were stricken with heartache and felt guilty that my baby was still alive. I didn’t want to talk about the pregnancy or talk about how excited I was out of fear of upsetting some very grief stricken women.
Yet at the same time I was excited and I was also nervous and scared that I may have the same fate. I managed to keep my baby inside for most of the pregnancy and then at 36 weeks I was induced. Sylvia could no longer stay inside and they felt she needed to come out.
Getting induced was for me a horrible experience. Within an hour of having medication I was in severe pain. It was a pain I had never felt before, (obviously) and it lasted 3 days.
I remember crying on the first night and begging for pain relief. I was given an injection but it really didn’t do much to help. I was given gas and air and after 48 hours I was finally given an epidural.
At the time I had no idea what was going on but I now realise the epidural didn’t work because I was in so much pain and apparently I shouldn’t have been able to feel it but I certainly did.
I became unwell during the labour. I had three drips including one in my foot. I became severely dehydrated and kept vomiting from the pain.
On day three the Doctor came to see me and said they would prepare me for a C-section. However 5 minutes later the plans changed. I was suddenly ready to push my baby out and my beautiful Sylvia was born at 2am in the morning.
Once Sylvia was born I had cuddles. She was then taken and dressed and I was told to go get in the shower. I did as I was told. I didn’t know any better.
What Is The Cause Of Sheehan Syndrome?
The midwife sent my husband with me and I stood up and walked to the shower. Now if my epidural had worked I don’t think I would have been able to walk into the shower. I really don’t know.
While in the shower I suddenly lost a lot of blood. I freaked out and my husband at the time went and told the midwife that I had lots of blood coming out. The Midwife told my husband it was normal, but she never came to look. She was tired after such a long labour.
I became really unwell and was physically sick for many weeks after my daughter’s birth. I did not know that losing the blood after having Sylvia had caused any damage but it did.
It caused something called Sheehan Syndrome. One of the initial symptoms of Sheehan syndrome is being unable to make breast milk. I couldn’t feed my baby and despite desperately trying I ended up exhausted and back in hospital as I had no milk to give.
What Is Sheehan Syndrome?
Sheehans happens when the brain is deprived of oxygen resulting in damage to the pituitary gland. My pituitary was damaged and started to fail.
For the first few months and years of my child’s life I repeatedly went to the Doctors telling them about my symptoms, the pain I was in, the fatigue. the exhaustion.
Each time I was dismissed and told I must have fibromyalgia or chronic fatigue. I had assessments done but my health never improved. In fact it was not until 2013 when I collapsed due to an Adrenal crisis that my diagnosis journey began.
Adrenal Insufficiency can be caused by two things, failure of the adrenal glands or failure of the pituitary resulting in secondary failure of the adrenal glands.
Apparently when a Mother gets Sheehan’s it can take years to diagnose. Failure of the pituitary gland to work and diagnosis requires specialist tests, brain scans and so forth and so for me the real tests began in 2013, 5 Years after giving birth to my child. It can sometimes take even longer to get diagnosed so I am glad I found out when I did.
It was not until 2015 that I finally got a firm diagnosis. I had Sheehan’s due to giving birth resulting in hypopituitarism. The Pituitary gland is such an important part of the endocrine system.
Pituitary Gland Damage
There is an anterior and posterior pituitary. The pituitary sends hormones to the adrenal glands, the thyroid and releases human growth hormone into the blood stream. It also controls sex hormones, prolactin for making milk and affects periods and body temperature.
By 2015, I had started treatment for Adrenal Insufficiency and Human Growth Hormone Deficiency. I now have an adrenal pump which pumps cortisol medication into my blood stream 24 hours a day.
This does the job that the Pituitary no longer does. I also have a nightly injection of human growth hormone. I need these medications for the rest of my life.
Without human growth hormone, my temperature would be up and down like a yo yo (like it used to be). I would have severe headaches and a weak body to the point I would be constantly in a wheelchair and bed bound.
Without the Cortisol medication I would die.
Adrenal Insufficiency Diagnosis
I need constant round the clock medication and if I miss a dose or my body is under more stress due to an infection, a shock, surprise or illness then I need to increase my medication to avoid adrenal crisis and death.
That is the reality of it, no cortisol results in death.
I have been using an adrenal pump for one year now and have been on growth hormone for two years. I will always have fatigue to some extent and have to vigilantly monitor my cortisol levels throughout each day to avoid a medical emergency.
I can no longer work in my previous profession as a teacher. I can’t do all a Mother usually does physically, however I have adapted and we have made adjustments so I can give my daughter the time she needs in different ways.
I also found blogging. I can sit in bed and blog. I can sit on the sofa and blog. I can go on social media, make printables, take photos and be a professional blogger from my own home.
Blogging gives me an additional purpose alongside motherhood. It allows me to give my daughter opportunities I could not have otherwise and allows me to speak about my health condition.
I can share inspiring content to help others. I can write about how life really is and when I need to rest take a break and rest, I can do. You can’t do that in a 9-5 job.
So that is my story. Giving birth gave me Sheehan’s. I have an official diagnosis and it is Sheehan’s resulting in hypopituitarism resulting in Human Growth Hormone Deficiency and Secondary Adrenal Insufficiency.
I also have chronically low Iron, low Vitamin D, B12, Folate and Zinc. I am always working on these and trying to get the best vitamins into my body I can.
I now have regular Iron infusions and B12 injections and am finally in a place where although I am chronically unwell I am able to do all I need as a Mother with support from my husband.
I am still fighting the NHS to get the
funded, for now I pay for it privately.
It is a huge expense for me but I’ve stayed out of hospital for a whole year compared to 22 stays before the pump and that saves the NHS hundreds of thousands. It also means I can spend more time with my daughter as a mother.
My health has been as stable as it can be for a year now and I hope one day I can have a second child, however I am not able to do this naturally, It would have to be through adoption but that is a whole other story.
I love being a mother and despite my illness having Sylvia is the best thing that ever happened to me. She is my happiness, my joy, my silver lining and I would do it all over again just to have her in my life.
It is a heavy price to pay to become a mother but a price I accept and one I am learning to live with.