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Giving Birth To My Child Gave Me Sheehans Brain Damage

sheehans

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 brain damage.

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.

sheehans

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. 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. 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 stayed on a ward with other pregnant Mothers who were 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. 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 Sheehans Disease. One of the initial symptoms of Sheehans 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.

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. 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.

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 Adrenal pump 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.

Angela x

SHEEHANS DISEASE

97 Comments

    1. Thanks. Some conditions can take years to diagnose… especially when the doctor just says your being anxious and over worrying … I kept trying to get help and I got my diagnosis on paper when my daughter was 7.

  1. I’m not planning on having children but I had no idea such a thing could happen – thanks for sharing and opening my eyes! I’m also baffled about how long it took for you to get diagnosed. I know they do their best, but you’d think doctors would have figured it out sooner.

    1. Your right! I have a huge story to share! It’s a crazy one but that’s what everyone who knows me say… write a book! There is so much to share!

  2. Goodness me, obviously I knew you were ill but what an awful thing to happen. I had no idea this could happen – the more I learn about pregnancy and labour over the years since giving birth, the more I realise that so many things can go wrong. I’m glad you finally got the diagnosis and I really hope you manage to get the NHS to fund your medication.

    1. Thanks Lisa, Getting fully funded would really help. A year of medication is cheaper than 2 or 3 ambulance trips so it is so worth it… i hope to get funded eventually.

  3. Oh my, I’m so sorry you had to go through all that! I’m so happy to know your child was born healthy thought – and still is!

    Kayleigh x

    1. Yes that’s the most important thing that Sylvia is healthy! I can cope with being unwell myself and would be sick forever if she could just stay healthy that would be great!

  4. I’m so sorry to hear that you had such a stressful childbirth and I’m appalled to hear about the car accident and the fact that the nurse didn’t come to check up on you afterwards! I’m shocked it took so long to diagnose but wish you the best for the future now that you know how to deal with it!

    1. That’s the key to this, I’ve got the right medication and learning to manage the condition now….and be a great mum in the process.

  5. Wow, what a lot you have been through! I’m glad that you have found that writing and blogging gives you an additional purpose alongside motherhood now, thanks for sharing your story so openly x

    1. Your welcome. I have been through some difficulties but coming out on top now! I think the key is learning to live with limitations and be happy anyway!

  6. Gosh – what an ordeal and how brave of you to share. I have not given birth and won’t be as I have decided not to have children but thank you so much for sharing. Good luck in everything x

  7. That is such a sad story Angela, thanks for being brave to share! I am afraid that NHS with their limited funding and costs constraints are failing many of us! I was also in labour with my first for about 40 hours and first 20 managed without an epidural but was much luckier than you. Also natural labour is not that natural afterall it seems, I know have heard so many terrible petrifying stories, I am grateful every day we managed alive kids and I. Best of luck in your fight with NHS, perhaps you could get a lawyer who could support your cause from a dedicated charity ?

  8. It is so heartbreaking to read that you had to go through so much! I am glad you were able to prevail everything. It is crazy that some people don’t even think that their actions can change other peoples lives for forever! I am glad your daughter grew up to be beautiful — that should at least make you know that a greater power is looking over you and your family.

  9. Oh no! It sounds like the medical team in the hospital you gave birth in, were totally uninterested and caused you so much suffer. I’m really sorry for all you’ve been through, but I know that having your beautiful daughter must be a real blessing to you!

  10. I’ve been reading more and more how the medical staff in first world countries are letting women down when it comes to care during labor, especially in the US. This should not have happened, and I’m really sorry.

  11. Oh my gosh, I’m so sorry you went through this. I can’t even imagine. I did not go through something like this, so I don’t even know what it’s like. I’m so glad you got your daughter despite the issues!

    1. It is sad it took so long… I could not breast feed as prolactin is affected by sheehans and they could have picked it up then but they never did!

  12. Oh wow, you’re very brave for sharing this. I admire bloggers that can share personal details about their life – especially because it might help others. I’m so sorry this happened, but I’m glad that you gave birth to a lovely little girl.

    -Lauren
    http://www.shootingstarsmag.net

  13. Oh My! That is a pretty harrowing experience to have lived through for both you and your baby. I am so sorry that happened and I had no idea it could happen. I’m so glad you and your daughter are still here with us. It’s sad that they didn’t diagnose you sooner.

  14. I never heard of this. Thanks goodness you have your beautiful daughter. …….I have three daughters, my sister just finished read and explained that her sister on law is on the same situation.

  15. I know your daughter is the light of your life and you couldn’t imagine your life without her. I imagine that the hospital should have been held responsible for the mistreatment, at least I hope so. I’m very happy your daughter was born healthy and happy.

  16. Oh Angela, that was such a difficult yet beautiful read. It must be good in a way to have the diagnosis but so hard knowing at the same time. You are such a strong person and I’m glad you’ve found blogging! xx

  17. Wow – what an incredibly scary and long journey you’ve been through and are still going through. You clearly have so much strength and determination, it’s inspiring 🙂

  18. Like you I had a traumatic birth with my eldest – it took me years to realise I was suffering from birth trauma and PTSD, and it’s only really now – nine years later – that I can think about the birth without feeling anxiety and dread. I’m sorry to hear that your health problems are continuing to this day. x

  19. This is why our health care is so terrible, mums are not given enough support and dismissed when they know something is wrong. Then years later complications from the birth can arise. It saddens me that you have to be on so much medication but one thing is certain you were born to be a mother and you are a very good one at that x

  20. Gosh this gave me goosebumps, I have had a whole host of really horrific neurological issues since having Harry and they kept telling me it was CFS and fibromyalgia. Last year I saw an endocrinologist who was convinced it was related to the pituitary gland and yet left the practice before tests were done. The follow up rubbished the idea and although I was tested for Addisons, and negative, that was as far as it went. Someone mentioned this as a possibility to me the other week, I see my new consultant in October and will be asking for more information about it.

    1. Oh I hope it’s not but yes… giving birth can give a host of issues and it can take years to work out. Good luck seeing your specialist Laura. I hope you don’t have this but also hope you get a diagnosis at some point.

  21. I am so sorry this happened to you and that it took so long to diagnosis. What a traumatic experience from the moment of the accident. It is good of you to share this as it may help others too.

    1. I hope it helps someone else in a similar situation! At least knowing about it means it can be ruled out for mothers in the same boat – looking for a diagnosis for neurological and endocrine issues.

  22. You are such a strong woman. The very fact that you are sharing this story with us is a bold over right there. Thanks for inspiring us and battling all that life threw at you… and you have your girl always smiling at you, always there for you anyway. 🙂 Cheers!!

  23. I am so sorry that you are having to deal with this type of an issue. I had never heard of this happening to anyone before while giving birth. You are a strong, brave woman. I’m glad that you joined the world of blogging – something you can do from home. I send many good wishes your way for healing, happiness and prosperity.

  24. I am so sorry you had such a difficult pregnancy and labour, it must have been so difficult on you. It is great news that you are now getting the treatment you need. It is such a shame that it took so long though.

    1. It is a shame and I think with more awareness people could be diagnosed earlier. Half the doctors and medics I have met did not even know about my condition.

  25. Angela, thank you for sharing your story. I have identical twin daughters who have an adrenal insufficiency. As a mother with babies who suffer with this it was extremely horrifying. Whenever they got a stomach flu and couldn’t keep medication down, I would have to give them their cortisol by injection. I almost lost both of my babies at 18 months because the pediatrician didn’t fully understand the life-threatening disease. We dropped this doctor and pushed their endocrinologist to be their standing pediatrician. What a wonderful doctor he proved to be. In addition to adrenal insufficiency, both girls were afflicted with hyperthyroidism which made them extremely ill. Eventually, they had radiation treatment to cause damage to the the thyroid so it would flip to hypothyroidism. Because of this, weight issues from the adrenal insufficiency and hypothyroidism is a huge ordeal. Today, my girls are 29. They still struggle with weight issues which is difficult to see their pain. But, they are beautiful young women inside and out and my pride and joy.

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