Mumsnet Talk

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My name is Hollie and I am 31 years old - I live in Hertfordshire
6 weeks ago I was 32 weeks pregnant with my first baby

Everything was fine... my husband and I we were planning our Christmas holiday with our baby, getting everything ready for the nursery and enjoying our time before we became a family of three
I had suffered with asthma since i was 3 years old and in the last couple of years (and during the pregnancy) had been struggling with some breathlessness
It had been put down to the pregnancy/ and the asthma and i wasn't too worried about it...6 weeks ago over a period of a week I fainted/ blacked out 4 times...I went to hospital but they didnt find anything wrong and again it was put down as a pregnancy sympton and was told to rest and take it easy.

Something didnt feel right - so I was referred to see a consultant - who transferred me to a Cardiologist ( as with the breathlessness I felt i was getting palpatations) - they performed an eco on me and I was lying there thinking - "hes going to say everythings fine "... After the examination he said to me "you have a critical heart condition or a fatal blood clot, you have to be admitted into hospital now and your baby will be delivered in the next 48 hours. You're a very sick girl".

I couldnt get my head around it...it was such a shock - i was rushed in an ambulance to my local hospital and 2 hours later was transferred to Hammersmith Hospital in London.
A further eco and CT scan revealed I had an incurable rare and critical lung and heart condition called Idiopathic Pulmonary Arterial Hypertension (PAH)
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A consultant came to see me and told me how serious the condition was and informed me there was a good chance I was not going to survive this
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How do you get your head around being told to get your life in order and tell your friends & family how serious this condition this...luckily the baby was already at a stage where she would be viable - but all i could think was that i was going to be leaving my husband behind alone with our new baby.

Pulmonary Hypertension is an extremely serious condition in itself - but combined with the pregnancy it was a very fatal combination - patients with the condition are told never to fall pregnant because the chances of both mother and child surviving are not great.

From what I believe, there are only a few hundred cases in the world of PAH in pregnancy!

The condition is basically extremely high blood pressure in the pulmonary artery and my heart was extremely enlarged... I was immediately started on medication for the condition - i was on a 24 hour infusion of a drug that goes straight into the large artery of the heart as well as tablets to help expand the arteries which had become very restricted

A natural labour was out of the question - so a caesarean section was planned .... i was told about the risks and the research that we found online was not very reassuring to myself and my family = but we knew that we did not have a choice ... it was our only route and we put all of our faith into the amazing team of consultants at the hospital

My husband got in touch with someone with the same condition who also got diagnosed with the condition during pregnancy 13 years earlier - it was great to speak to someone who had been through the same ordeal and had come out the other side to tell the tale because all i was seeing was faces of doom and gloom... It was hard because women are told not to fall pregnant, the number of cases of PAH in pregnancy are so limited, so the dr's really didn?t know how things were going to go.

I was in hospital for 2 weeks before the Caesarean Section took place - the operation had to be performed very slowly because of the condition... we ended up being in surgery for over 5 hours - it was a nerve wracking time for myself and my husband as well as our worried families waiting outside!
Our little girl was born at 35 weeks weighing 5lbs 4oz - she was perfect
I was taken off to intensive care where I stayed for 10 days.

It was a critical time for the PAH team as they didn?t know how my body would react after delivery and in the previous case the mother had passed away post surgery - so each day i thought " will I wake up tomorrow" it was an extremely scary time - and not being able to see my daughter regularly added to my worries.

My husband was amazing throughout - he had to be a very hands on daddy from the start and slept at the hospital every night with her and spent all day sitting with me.
It was a very scary time for all our friends and family.

After 10 days i was transferred back to a cardiology ward where I started doing things for myself - i had to learn to walk again and even going to the toilet was an extremely strenuous task
After another week i was allowed home..I have a 24 hour infusion which is pumped into my heart via a large artery and I have to change to the syringe for this every 12 hours - its a change in lifestyle but at least I am home with my family.

They dont know how the condition will develop now - I will be closely monitored on the medication and the condition will be assessed again in a few months time
They dont know about my life expectancy but it has been proven that the condition does shorten it - I just need to learn to live each day as it comes and make the most of every moment!

The condition is so often being mis-diagnosed in people, most commonly for asthma and it was something that I wanted to make people aware of. The Pulmonary Hypertension Association will give information of symptoms and although the condition is very rare, awareness is important.

We feel lucky and blessed to have our daughter - if we had been aware of the condition earlier then we may not have her - so she is our little miracle...although I have only been out of hospital 5 days I am wanting to get involved in fundraising/ and awareness of the condition..

knowledge is power so thanks for reading - please share my post with as many people as you can.

Kind regards
Hollie

The Pulmonary Hypertension Association can be found here: www.phassociation.uk.com ? they were just an incredible support for us and our families.