Monthly Archives: October 2021

Remembering my HG Loss; Angel

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Today, (21st October 2021) is the13th anniversary of my little ones death. ‘Angel’ was my sons twin, he/she died at 9 weeks into the pregnancy due to the severity of my hyperemesis gravidarum. I only started receiving IV fluids and IV medications at 9 weeks into my second hg pregnancy, the morning after, we found out that one of our little ones had passed away.  I cant help but wonder if I had received more help for the hg, would I be blessed with twin 12 years old instead of just one?

Today I look back to my 2nd HG pregnancy during 2008/9 and think how badly I was looked after by the health care professionals, especially compared to my 2019/20 pregnancy. I was only 20/21 and despite having suffered HG before, was neglected and left to look after a toddler all the while severely dehydrated and deathly ill. My condition became so bad that I went into early liver failure on several occasions. In the end my liver was the reason I had to deliver Joshua prematurely. Throughout that pregnancy I was denied strong anti-emetics like ondansetron until well over 20 weeks despite multiple admissions to hospital and practically begging for help!

How is it I was allowed to get so poorly that I lost one of my babies? That I went in to early organ failure? And that I could be denied such a lifesaving drug for so long despite being so unwell??

Sadly this situation wasn’t rare or even uncommon, especially back then. Since Kate Middleton brought light and awareness to this awful and debilitating pregnancy condition, things have started to improve. But there are still some hospitals and doctors who are refusing medications like ondansetron to women who need it, for uninformed reasons.

Many GPs and hospital doctors do not like to give out medications that can increase the risk of congenital abnormalities to the foetus. It was always believed the Ondansetron increased the risk of cleft lip/cleft palate. And in truth there is a very slight increase in risk. But the risk is tiny.

In every 10,000 normal pregnancies there are 11 babies born with cleft lip/palate

In every 10,000 pregnancies where a woman has used ondansetron there are 14 babies born with cleft lip/palate.

Thats an increase in 3 in 10,000…when you compare this to the risks to the baby when the mother is dehydrated and malnourished, its seems tiny and insignificant. Personally I feel that as long as the risks have been properly assessed and the mother informed then it should be her choice to take medications like this. They may very well be a life saver for her and her baby! Would my baby be here if I had been allowed Ondansetron?

So today I think about all the women who are still left to suffer without the proper help they need to deal with their HG. To the women who sadly lose their babies to HG.

Did you know that the chance of pregnancy loss in an HG pregnancy is 1 in every 3. So one baby in every 3 HG pregnancies wont make it to birth.
Many women feel they cannot continue and are forced to terminate their wanted pregnancies because they cannot cope with the symptoms of HG. 5% of all terminations account for women who couldn’t deal with their pregnancy symptoms. That’s a huge amount!

I believe its time that women are supported, its time that doctors and health care professionals listen to the struggles of women and actually help them control their nausea and vomiting for the sake of all the beautiful little ones lost because of this insidious condition.

If you need help with you symptoms of nausea and vomiting. Or if its become so bad that you feel your only choice is to terminate. If your health practitioners are not taking you seriously I urge you to contact the pregnancy sickness support charity who can help advocate for you and give you some support to help you deal with your symptoms. They are non-judgemental and will LISTEN.

https://www.pregnancysicknesssupport.org.uk/get-help/

Please reach out for support, you don’t have to face HG alone!

R.I.P Angel
R.I.P all little ones lost to Hyperemesis Gravidarum!

You will never be forgotten and always remembered!

 

 

 

Hyperemesis Gravidarum & Mental Health

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Today is World Mental Health Day 2021 and I thought I would just post about how much mental health can take a hammering with constant nausea and vomiting from both Hyperemesis Gravidarum and Gastroparesis.

During a HG Pregnancy

It is hardly a surprise that Hyperemesis Gravidarum can take a major toll on a woman’s mental health whilst she is suffering. The random and frequent nature of vomiting and constant nausea can leave the sufferer house bound, too worried to be far from the bathroom in case an episode of vomiting occurs whilst out. This can lead to feelings of isolation. Not being able to take part in social activities with friends and family..

The feeling of not being able to enjoy pregnancy got me down whilst I suffered HG. Women were meant to be ‘glowing’ and enjoying their pregnancies. I always felt like people thought I was ungrateful which couldn’t be further from the truth. I desperately wanted my baby but hated feeling so awful with no break from the 24/7 nausea. The only time I had respite was when I slept and even then if my stomach filled with bile/acid it would cause me to wake to vomit. This would cause disrupted sleep which would add to making my mood even lower.

Being always in hospital would make me anxious and low, I hated being away from my husband and children. This was even worst when covid hit and I wasn’t allowed any visitors.

Then there was the anxiety that this constant sickness would hurt my baby in some way. Would the malnutrition and dehydration cause physical or mental abnormalities in my unborn baby. How would it survive without nutrients. This is turn led to guilt. I would feel like it was my fault and that I was responsible for my husband and childrens worry about my health. The guilt of not being a proper mum (cooking their dinner, helping with homework etc). The guilt of what I may be doing to the baby I was carrying.

The guilt, misery and feeling sick 24/7 would leave me wishing that I had the guts to terminate the pregnancy or even worse, wishing I would miscarry. Then I would feel hideously guilty for daring to think like this. I have gone through several miscarriages and a stillbirth, of course I would never want this for my baby! I loved my baby, he/she kept me going through this hell. I didn’t really want them gone just the dreadful HG. But I hated myself for my sinister thoughts, there are women who would do anything for a healthy baby and there is me wishing mine away. But this is how hideous HG is. You feel that unwell that you have these awful thoughts, you are so desperate to be out of this horrific state that you get to wishing your precious baby away. But its not really wishing your baby away, its desperately wishing that feeling so awful will end. You feel so guilty at your thoughts you end up wishing you would die so that at least you could be out of the physical and mental suffering. I would think, at least if I died I would be away from feeling so terrible but I wouldn’t be guilty of wishing my own baby gone or wanting to terminate. I would even plan my suicide. Wondering what to do to cause the least damage to my husband and children. Desperately praying that the HG would just hurry up and take me so I didn’t have to do it myself!

Physically feeling so dreadful and low blood sugar leaves you irritable and angry that you are suffering and that people are getting on with their lives. You end up resenting those who have easier pregnancies, wishing people knew what it felt like. Your thoughts turn increasingly bitter and angry. All the while being so sad that you cant enjoy the pregnancy, and all the positive things that go with it, baby showers, gender reveals, getting excited over baby clothes. Instead you are either hunched over a bucket or the toilet or in bed praying for the nausea to just stop!

As the pregnancy continues and the symptoms of HG don’t subside your mood gets lower and you wonder how much more you can put up with. You worry that you wont bond with your baby. How can you love something that has brought you so much suffering? People don’t understand, they can comprehend sickness at the beginning of the pregnancy. In fact most pregnancies involve some nausea and vomiting. But this is a different level, and very few people can grasp just how bad it is. People think they know what its like, everyone has times of nausea and vomiting. But very few people truly know HG. To know HG you have to have suffered from it!

People grow tired of hearing your suffering/praying for you. Their patience ends, some even feel like you are exaggerating. You feel desperately alone with your suffering. And the biggest feelings of life being so totally unfair? All you can think is ‘Why me?’, what did I deserve to get this. All logical thoughts of genetics and hormone intolerances go out the window and you just feel bitter to everyone who isnt feeling just as horrid as you! HG is a vicious ball of misery!

After a HG Pregnancy

Sadly some women arent able to hold on and have to accept that they can no longer carry the pregnancy and are forced to terminate. This comes with its own feelings of loss and sadness. I have never terminated a pregnancy so cannot comprehend just how terrible it must feel to have to go through that. However having lost a twin to HG, you never get over the guilt of feeling, if my body could just have been stronger, would my baby still be here? It is hard to see that you did an incredible job and that life can be unnecessarily cruel. To go through HG and come out without a little bundle of joy is so hard. How can life/God be so awfully cruel and unfair?

After the HG has ended, people expect everything to be ok! You have your baby, for most people they no longer feel sick at all. So people just expect you to be happy and grateful! No one tells you that sometimes you don’t immediately bond with your new baby. Sometimes you don’t feel that immediate bliss. Sometimes you don’t feel better. Sometimes your struggle isnt over if you have postnatal complications after birth or if your child is born with health issues.

After your baby is born you are left with the aftermath of the pregnancy, you are left wondering why you had such an awful pregnancy and will it be the same if you have any more children. No one ever talks about the trauma that is left behind. The flashbacks and feelings of failure. The absolute paralysing fear you may get when you have a stomach upset and those feelings of panic that you might be pregnant.

Hyperemesis can leave you with long lasting depression and anxiety. You are far more likely to have postnatal mental health problems after going through a HG pregnancy but there is no support. You try to talk to your partner or friend and they cant understand. HG is in your past but people don’t realise that you have to deal with it and process what you went through. Going through HG, you have to take things  minute by minute, its not possible to deal with the emotional side until you are through the other side. But this is when people are least understanding. You have the role of mum, you don’t have time to deal with your own baggage as you are too busy looking after this demanding little baby..

One of my biggest struggle after I had given birth is knowing I wouldnt be able to have anymore children. We always wanted a big family, and had hoped for 4 children! But to have any more children would be too dangerous for me. It might be fatal next time. I also had so many health problems after I gave birth. These include, infertility from premature menopause, cPTSD (complex post traumatic stress disorder) and gastroparesis. I was left feeling very depressed that what should have been a happy time in my life was cruelly snatched away from me. To this day I still feel resentful at not having a good pregnancy, at having to spend most of my pregnancy in hospital, attached to tubes and drips! And I still battle with the feeling of great unfairness! As soon as I go anywhere near the hospital I get episodes of intense anxiety and panic and I get flashbacks of my times in hospital.

I have no answers for you dear reader! Im sorry I have no advice other than to take one day at a time. Going through HG is not a small feat! If you have gone through it, then you are incredible but be gentle with yourself and know its completely ok to not be ok!

 

***Its ok if you are grieving for the good pregnancy you didn’t have, you need to mourn it!
***Its ok to be sad that you did not get to experience the joyful pregnancy events, it is sad that you were too unwell to enjoy things
***its ok to be angry that this happened to you, its unfair!
***its ok that you didn’t feel bliss when you first saw/held you baby…the love will come!
***Its ok that you panic when you feel sick, it must bring back so many terrible memories
***Its ok to cry at all the things you missed out on when you were sick..you need to grieve the things you missed out on!
***its ok to resent other peoples pregnancies..life can be cruel, no one deserves to suffer! But remember just because you cant see them suffer, does not mean that they are having a good pregnancy
***Its ok if you became depressed or anxious after your baby was born…its is not a surprise you are struggling after everything you went through!
***Its ok if you did not recover from HG after the birth…it takes different people different times to recover. Take things slow and be kind to yourself!

Do
– Seek help…you don’t deserve to suffer, your mental health is just as important as your physical help..whether you look in to hypnosis or counselling…get professional help to get through these difficult times. If you need medication, this is ok too! Accept any help you can to get you through this.
– TALK…it is good to share your feelings, you deserve to have your experience validated! Speak to your GP or get some counselling to talk through your experience and how it has left you feeling. You deserve to be able to process your experience and have help getting through this
– Be honest…if you are depressed, anxious or suicidal…there is nothing to be ashamed of, you have been through so much but now is the time to admit this and get some help, you are worthy of help and deserve to feel better
– Be gentle with yourself…it will take time for you to feel better. Do things that help you get through this tough time. Make time just for you to do something to help your mood, whether its reading a book, getting a manicure. Anything to give yourself a treat!
– Be patient…it will take time to process what you went through, do not rush through this process. It is better to take things slowly and process it properly than rush through things only to bury them in your subconscious where they may appear one day in the future if you have not dealt with them properly!
–Be Kind!..going through HG and the aftermath of HG is awful but remember that many people are going through individual struggles too!
– Communicate…tell people what you need from them, whether its a chat or whether is it something that can help you through the day, like child care or picking up groceries. Generally people just want to help if you are struggling. Let people know what they can do to help you

Don’t
– Be Ashamed…you are a strong person but even strong people need help and support from time to time!
– Compare you HG journey and its aftermath to other sufferers…each persons experience is different, no 2 cases are the same. Your experience is just as important as anyone elses no matter what severity of HG you had. Even mild HG causes severe trauma! Do not think that someone with a more severe case of HG has it any harder than a mild case! People deal with different things in different ways, it is important to focus on your journey of recovery!
–Ignore or deny your feelings…you deserve to be heard and deserve support to get through this
– Assume your low mood/anxiety will go on its own…if you are suffering with mental health problems whether pregnant or postnatal, seek help as it may get worse if you do not treat it. Do not try and manage on your own
–Don’t assume other people have brilliant pregnancies…its ok to mourn the lack of a good pregnancy, but do not assume that other people have wonderful pregnancies. You never know what someone is going through and how they are coping with things.
– Lash out…its ok to feel bad, to be sad and angry but it is not ok to lash out at other people or yourself. It is no ones fault what you went through.
– Cope on your own!

 If you feel suicidal please reach out, nothing is so bad that you need to go down this road! Below are a list of useful numbers that you can call if you need to talk to someone!

National Suicide Helpline UK 0800 689 5652

Samaritans: 116 123
SMS: Text SHOUT to 85258

National Suicide Prevention Hotline tel:1-800-273-8255

I am always here if anyone would like some support or info of how to get support. Please send me an email to:
michellestevens1802@gmail.com or text/phone me on 07889453512

HG Reality Quote

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One of my dear HG friends is making reality quote pictures for HG awareness and I thought I would share mine on here!

I find it frightening how one day I can be perfectly fine and then the next I find myself so sick with Hyperemesis. Had I known that for the next 2 years I would not have a single day where I didn’t have at least one episode of vomiting, I think I would have seriously contemplated ending the pregnancy right then and there.

Hyperemesis Gravidarum is hell but the nightmare it left behind has been the most traumatising. You expect to make a full recovery when you have your baby in your arms and for most women this is how it is. But for a small number of us, things don’t return back to normal and we are left with medical and mental health complications that can be long term or even life long.

You take each day of hyperemesis as it comes knowing that you are one day closer to that feeling of pure bliss where you have your baby in your arms and you are feeling so much better. The nausea is gone and vomiting a distant memory. So imagine if you are expecting this and holding on dearly for that! You get to that special day and you have your beautiful bundle in your arms but the vomiting hasn’t gone and you are still feeling that awful nausea! You panic! Doctors reassure you to give it time, its hormonal and it will settle as the pregnancy hormones leave your body!

You give it time, a week goes by, then a month and before you know it a whole year has passed and yet you are still experiencing nausea and vomiting. You are still suffering despite there being no chance of you being pregnant. Imagine being stuck in that nightmare!

It took 15 months after my baby was born before I finally got a diagnosis, nearly 2 whole years of vomiting daily to learn I now have gastroparesis. But whether HG caused that or the feeding tube injury we will never know. It is possible it is a condition I already had but made worst by pregnancy. I will never have the answers, I just know that one day I was fine and the next I became sick and that sickness didn’t end even after the HG ended!

Final Diagnosis and Tube Referral

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So weeks after these were due I finally have the result of my gastric emptying scan and to be honest I was pretty shocked by them! I thought I had a motility problem but I just didn’t realise how bad it was.

It seems that during the time I was at the hospital for the gastric emptying scan the food barely moved at all, there was only a tiny amount that was digested that they couldn’t measure it precisely. With the pictures and data they collected Doctors could see that it would take my stomach 910 minutes to half empty. The average person takes between 43-115 minutes to half empty so my stomach was significantly slower than it should be. My GP had the results before the consultant and diagnosed me with severe gastroparesis, with this result, my symptoms and my continued weight loss he has suggested a feeding tube. My dietician also suggested this and asked for me to be referred to endoscopy for a feeding tube placement.

I don’t know how I feel about ‘needing’ a tube, I feel upset with myself and my stomach for not working properly and i’m frightened about having to rely on a tube again and not eat normally. However it has been a long time since I have been able to eat properly anyway. I have to avoid eating in public or going out for meals with friends and family because I can end up vomiting so I often avoid it or take double of my medication. If I take double medication, It can stop me vomiting (until the meds wear out) but it doesn’t stop me getting the same excruciating pain I usually get. It is so much easier to vomit sooner and end the pain quicker than delay the vomiting and have to deal with the agony until my the medication wears off and I end up vomiting hours later. So eating ‘normally’ has already been something that I cannot do.

I worry about the procedure of the tube itself. My dietician is thinking they will give me a gastronomy or gastro-jejunal tube (G-tube or GJ tube), which is surgically placed and comes with quite a long recovery. I worry about how I will cope with the pain of it, especially with a little toddler running around.

On the other hand I really welcome having some nourishment back, being able to feel like I have more energy. Not getting enough nutrients is affecting my body in lots of different ways: My periods have not come back since the birth, early onset menopause, thin and dry hair that breaks easily. My nails are brittle and break easily. I am ALWAYS so tired and cold, I have to wear 3 layers of clothes inside and 2 pairs of socks, even with the heating turned on. My hips hurt when I sit on a hard chair/bench or in the bath. Laying in bed is uncomfortable where I have so little fat. I am so irritable and my mood is so up and down. I am prescribed medication for my mental health condition but it doesn’t always stay down so my mental health in uncontrolled. I hate how I look now, I don’t look healthy and always have such heavy eye bags. Having the tube giving me some nutrients can improve all of this for me and give me such a better quality of life, so I welcome the idea of this.

In the last few weeks my weight has continued to drop and I hit a new low of 115lbs, my GP has asked that I get an expedited urgent appointment for this tube, so now I am waiting for an urgent appointment with my gastroenterologist to discuss the need for the tube. In the meantime he has doubled my erythromycin medication. Unfortunately I don’t find this medication helps me at all and i’m allergic to metoclopramide and domperidone! However due to the delay in appointments because of the pandemic I have been warned that even urgent appointments are taking a long time. I just hope its soon because I am really struggling now, this condition is getting me down! For nutrition I have Fortisip milkshake supplements that contain minerals and are full of calories but I often struggle to keep these down as they are quite heavy on my stomach.