So some background. I have 1 ds who is 4 and i'm pregnant with my 2nd due feb
With my 1st I had ICP / obestric cholestasis , despite itching for around 6 weeks to the point my hands and feet bled , had cuts stratches all up my legs the hospital refused to test my bile acids
One such consultant called me a neurotic first time mother and told me it was allergies , if you know anything of ICP you will know extremely high Bile acids can be associated with still birth and early delivery is recommened yet this was her attitude.
Thank you to Jenny Chambers from Icp charity for giving me advice on how to approach hospital and my assertive mum who told the consultant we would not leave until my bile acids where taken, the consultant agreed.
However she told me she was 99.9 percent sure it wasn't ICP, fast forward 5 days later i receive a call stating my results are in and can i urgently come to the hospital as I will have to deliver.
I had my little boy less than 12 hours later at 36 weeks, he stopped breathing when he was born and we spent 10 days in hospital.
I was invited for a de brief and a apology for my care was issued and i was told i could chose to complain. There was a catalogue of errors in both my care before birth and my babies care after birth
Thank goodness my ds is fine , no lasting effects and i am fine so i accepted the apology and decided i wanted to leave it at that as just wanted to get over the trauma of it all.
When i got pregnant this time i debated using this hospital, it is only 1 close to us but we decided due to apology and promise of next experience being better we would go there.
To also had i previously suffered from anorexia and severe health anixety, in my last pregnancy this was handled well and i was in touch with mental health midwife. I told them at booking i still struggle at points with health anixtey and if anyone else has struggled with a eating disorder i am sure you will know a little bit of your brain always struggles.
First red flag was they said due to covid despite history of anixety anorexia and traumatic experience last time that no extra help would be available due to covid.
I've paid privately for alot of mental health help over the years so i thought fine if it crops up i'll do that
Second issue arose at 20 week scan when it appeared on my scan notes a comment about high maternal bmi, i don't have a high bmi, i am the biggest i have been but as a women who has spent most of my life underweight i was still what most would consider slim when i got pregnant.
I was distraught over this and was later told it was a error. Of course i got over it as baby ok and thats all that matters
Then dreaded itch started and to my surprise the care offered has been excellent, i have been diagnosed with ICP again but care is good so far in that aspect so i thought ok its all ok this time
Until yestersay i go to standard midwife appointment, blood pressure fine etc etc.. measure bump and then i went to do a urine sample
I come back and tell me size of my bump is grossly abnormal 5 weeks ahead ( i am shocked as can still wear pre pregnancy jeans and paid for a private growth scan 2 weeks ago and baby average as his brother was)
I ask her why this would be .. she says i don't have too much fluid so not that
Must just be having very big baby, would be 12lbs if he continues apparently i'm not even on the centile im over the 100th centile.
She tells me shes asked for a urgent growth scan but they have refused due to covid so will need to just see what happens in 6 weeks
She mentions gentic abnormality can cause this but unlikely by this point i can hardly breathe i tell her this has terrified me, that with anixety i don't think i can cope with this, told tough luck nothing can be done to covid.
I walk out the room distraught by time i get to car to oh i can't speak for crying. I show him growth chart with this dot plotted way above my chart. He says he doesn't think telling me to wait 6 weeks is ok and to phone hospital so i do
Midwife tells me my anixety is not helpful and tough luck if im growing a big baby, as if i do not know my anixety isn't helpful but i can't help it.
However she then sees i have ICP and i'm high risk and agrees im already dealing with enough and i should get a scan.
She says she will speak to consultant and get back to me
She phones me back and says my measurement is way too big and midwife must of made a error as no way could i be measuring that big but unforuntately no room to scan me so come back and be remeasured in a week while i get my bile acids tested.
I ask if measurement is right what could it mean and she says it would be very concerning and then leaves me hanging
I was so upset we end driving 2 hours away and paying for a private scan. Fluid is perfect and baby is on same growth tracjectory he was on couple of weeks ago totally average and predicted to weigh about the same as what his brother was predicted with. Sonographer didn't measure my bump but did comment on it being neat and it not looking like a 5 week ahead bump.
Left scan reassured but annoyed the hospital felt it ok to tell me im measuring grossly abnormal and then just leave me to it despite my history
It then gets worse i was given access to a portal as apparently moving to new system at hospital. I was told i could view notes here so when i got home from scan i decide to view notes from appointment.
First error height states im 5ft 9 ... im 5ft 7 if i try and push it.. really im 5ft 6
Then weight it says im 20kg.. heavier than i currently weigh this was apparenetly my booking weight. So bmi is 30 making me obese ( immediately wonder if scan comment was a error of if this was always on system)
Then says i wouldnt disclose if i smoked at booking, never smoked a cigarette a day in my life which of course i disclosed.
Then it says risk assesment which was apparently done yesterday and says im high risk due to obesity. Now my pregnancy is high risk .. it would be high risk if my bmi was 20 or if it was 40 as i had ICP in my last pregnancy, in my trust this makes you automatically high risk. But nope no mention of this just says im fat based on a height and weight that arent mine
Then details of my sons birth says it was a uncomplicated birth and no problems during and after.... obivously wrong
And no issues in previous pregnancy. I would say a emergency delivery due to insane bile acids at 36 weeks was infact pretty problematic.
Now apparently these notes replace old system so clearly could drastically alter care i receive.
So i phone this morning and raise this and im told regards to height and weight this is what is in system so i will need to re weighed and measured to have it changed. I explai n its not whats on my handheld notes , doesnt matter apparently i need it re done.
I query this as now in 3rd trimester clearly will be distored also explain anorexia and fact in my last pregnancy i was only weighed once during pregnancy because of this. Explain after scan comment ive had to seek help again and been advised to not focus on pregnancy weight gain just to maintain eating good dier for baby so i say if i have gained pregnancy weight it could trigger a panic ( tough luck apparently if i wont be re weighed wrong weight and height stay)
I then query incorrect information around pregnancy complications and i am told il just need to explain this to all i see.
Pretty upset and stressed with all this. My family think i should move hospital to a hospital further away but with great reputation. I have my old hand held notes from my old pregnancy and the ones from start of this pregnancy so can easily prove my trust pregnancy history if i move.
What do others think would it be wise to move so far along ? I mean i surely cant accept all this wrong info and then yesterday telling me im grossly abnormal and leaving it at that surely isnt good patient care.
If i hadnt managed to pay for private scan god knows the state i would be in