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Erin - born at 26 weeks

Pregnancy and Birth

I was diagnosed with an autoimmune condition (Rheumatoid Arthritis) in Jan 2005. I had not thought I wanted children until this point in my life when my rheumatologist told me he wanted me to go on a drug that was a danger to the baby if I got pregnant and at my age (38) I had to decide now or never if I wanted to have children and if so needed it to happen ASAP.

I went home and thought, and thought and then thought some more. After discussion with my then fiancé (now husband) we decided I would go off the pill and we would see what happened. If after 12 months I wasn't pregnant we would say we tried and it didn't work and that would be that. I really believed that the fact I was 38, overweight and had an autoimmune condition would mean we would try and not succeed. Anyway, 2 months after going off the pill I was pregnant. I was so excited I had to do several tests just to prove it to myself.

My first 25 weeks of pregnancy were pretty uneventful, I had very mild morning sickness and was tired a lot but that's normal for a normal pregnancy. I did however have swollen ankles and my ob was monitoring this as I had read about Pre Eclampsia and knew this was one of the signs. However, blood pressure checks were normal and there was no sign of protein in my urine either so my obstetrician thought the swelling was because I was on prednisone and the fact I was overweight.

On the 3/1/06 I was 26 weeks pregnant with my little girl (we had had an amnio at 18 weeks). I had had a very bad headache 2 days before and what I thought was bad heartburn. I'd gone to the dr and she thought it was heartburn as well and an ECG was clear so off she sent me home with some heartburn medication. All night on the 3/1/06 I had really bad abdominal pains, they were high up and to the right and because they were nowhere near the baby I thought I must have eaten something that disagreed with me. I decided if they didn't improve Ide go to the dr in the morning.

At 4am my husband said something isn't right your groaning in pain we are going to the emergency room. I wanted to wait until a decent hour but he insisted. So off we went to the private hospital I was booked in to deliver in as they have an emergency room and are close by. On the way there I developed the most intense and painful headache I'd ever had, I honestly thought my head was going to explode. Once at the hospital they rushed me to the delivery area even though I was insisting it wasn't the baby. After this I don't remember very much. My blood pressure was apparently through the roof (above 230) and they couldn't lower it so I started fitting. They called in the crash team as the oedema (swelling) was so bad they were concerned about my airway. The drs told my husband I would need an emergency caesararian or both the bay and myself would die and even then they weren't that hopeful for either the baby or myself.

He was given the choice of me having the Caesar there or transferring me to the nearest hospital with a NICU. If I had the surgery there they said Erin would likely die being transferred but if I was transferred for the surgery to the big public hospital Erin had a better chance. Anyway off I went in the ambulance to the public hospital. Again I don't have many recollections as next thing I knew I woke up 2 days later in intensive care on a ventilator. The first thing I saw when I opened my eyes was a little Polaroid of my baby with the name Erin Rose 3/1/06, she was so so tiny and covered in tubes and wires with a tiny little beanie on her head. I remember hoping the photo meant she was alive.

I recovered very quickly physically from my ordeal and was out of hospital within 9 days. Erin however was to spend her first 4 1/2 months in hospital. At birth she had been given a 5% chance of surviving, she was very very underweight for 26 weeks, only 597g and because my condition had come about so rapidly there had been no time to prepare her little lungs with steroid injections before I gave birth.

In the NICU

Erin was on a ventilator for 5 weeks and then CPAP for a couple of weeks as well. Miraculously after all that ventilation she didn't require oxygen to come home on and her lungs seem to be pretty good even though she is considered to have Chronic Lung Disease because of the amount of time she was ventilated. Erin had the usual premmie problems, she had PDA which required surgery when she was 3 weeks of age. She had ROP which required laser surgery as well. She had an infection and also had such bad anaemia she required many many blood transfusions. I lost count after 10.

Erin is now 6 months corrected and is amazing, she is developing pretty normally for her corrected age so far. She is very small for a 6 month old baby, only 4.8kg but as she was only 597g at birth I think she's going incredibly well. She has something wrong with her vocal chords and will likely need some surgery for this soon, the drs think scar tissue or polyps from being ventilated for so long. Apart from that though she is just like any other baby and while her time in hospital was the hardest thing I've gone through in my life so far now that she is home I am just so grateful every day and every little thing she does to me is just so amazing. I look back at her pictures from birth now and read my memories of the days she was in hospital and cant believe she has come so so far. All births are miracles but I honestly feel like I have the most amazing miracle in Erin and that I am the luckiest mum in the world.

In regards to HELLP syndrome. I had never heard of this before getting it and I had done a fair bit of reading about general pregnancy things. I had read a lot about Pre Eclampsia and various placenta problems and so was on the watch for all these signs and symptoms but I honestly had no idea things could get bad so fast and be so life threatening without more warning. I honestly went from 2 days prior feeling pretty good and happily pregnant to 2 days later needing the emergency Caesar and nearly dying. In hindsight had I known more about HELLP and been more informed I may have been at hospital the night before and even though my outcome would likely not have changed even just been given a couple more of days and steroid injections for the baby's lung development can make such an enormous difference to the outcome for your baby. There is not enough information out there about HELLP and I really hope this changes as while not common it does happen and it is so much better to be prepared for anything then know nothing about it.