I’ll never forget the day I discovered that the treatment had worked and I was pregnant!  I was feeling ecstatic but also terrified as this was what I had been wanting for so many years and I didn’t want anything to go wrong.  Watching my friends all fall pregnant had taken its toll on me emotionally.  It felt like everyone around me was pregnant.

 

I had early scans to check that the pregnancy was viable. Luckily everything was fine. At 10 weeks, I started spotting and needed another scan.  Spotting on and off continued for a few weeks. 

 

I was 23 weeks pregnant when I started bleeding heavily and was told that I had placenta praevia. I would need a C section and monitoring very closely.  I was told I should not be left on my own as I would probably have more bleeds which would be heavy.  I felt scared and very lonely.  I also felt very frustrated.

 

Why did everything have to be so complicated? 

 

At 26 weeks, I had another heavy bleed and ended up in hospital again.  I was given steroid injections to mature the baby’s lungs just in case I went into labour, and after three days, I was allowed home and told to rest.  This pattern of bleeding every few days continued and I must have ended up back in hospital five times before it was decided that I needed to stay in permanently. The bleeds were getting heavier and my anxiety levels were steadily rising.  I was also becoming quite anaemic due to the blood loss.  

 

I felt safer being in hospital but it was not an easy environment to be in.  I was on the main ward where people around me were going into labour which meant that sleep was non-existent and I had the constant anxiety that I wouldn’t actually meet my baby due to all the bleeding.  My mother was amazing! She visited me most days and brought me food because the ward was unable to cater for a dairy free diet. 

 

As 32 weeks approached, I started having larger bleeds and was sent to the labour ward twice because they thought I was having contractions.  Luckily labour didn’t start.  I was sent for a growth scan because the consultant was concerned.  At the scan, the radiologist called in a consultant because they were concerned about the lack of growth and oxygen levels to the brain.  I heard the phrase ‘possibility of being retarded’ but the rest is a blur.  I was in complete shock.  I was told that I would have the baby the next day via c section.  We hadn’t even decided on names as yet as it had felt like we were tempting fate.

 

That night I had my largest bleed and was rushed up to the labour ward.  Everything was becoming very real.  I was asked questions such as

 

‘Do you want us to save the baby or yourself if anything happens?’ 

 

Questions I now know I shouldn’t have been asked.  I was so scared that I had completely retreated into myself.  The doctors were planning to use a machine to recycle my blood because they were concerned I’d have an allergic reaction to a blood transfusion due to pre-existing health concerns.

 

The C section itself is a blur.  There were about fifteen medical professionals in the room and all I could hear was counting.  This was apparently the medical team counting the tools they were using.  After about 90mins Jessica Jemima Emily Hitchen was born weighing 3lbs 3oz at 32 weeks at 10.21.  She was whisked up to the NeoNatal Unit straight away for a ventilator.  Within six hours she was breathing by herself with a little extra oxygen to help.  

 

I was quite unwell following the operation and didn’t see Jess for several hours.  It turned out that I had a Cerebral Spinal Fluid leak from the spinal anaesthetic and could not stand or sit without feeling very unwell.   The consultant told me I could have another procedure to help fix the problem which had its own risks or I could wait and see if the problem went away.  I decided to wait as I didn’t want to go through more procedures.  After two days I was sent home, but I could barely stand up, let alone walk.   At home, I struggled with panic attacks and could not sleep in between expressing milk for feeds.  It felt strange being at home without my baby.

 

Meanwhile, Jess was progressing well on the NICU.  I visited her daily and was allowed to take her out of the incubator for skin to skin care.  I expressed milk several times a day which she was given via a nasogastric tube.  She attempted to pull out this tube at least once a day and I found it very distressing to watch the nurses have to reinsert it.  

 

Jess was on the NICU for six weeks.  I started trying to breastfeed her at 34 weeks but found this really difficult.  Jess was very tiny and struggled to latch on -she also vomited alot.  The staff on the NICU were brilliant and very supportive.  When Jess reached 4lbs 9oz, she was allowed to come home. In order to prepare for this, I stayed overnight with Jess in a separate room on the NICU.

 

When Jess came home I was relieved but also terrified.  I was still recovering and really unsure about how I was going to look after such a tiny baby.  The community NICU team and health visitor were very supportive and visited regularly.  However, I still felt very anxious and incredibly lonely.  I switched to bottle feeding my breast milk as Jess was still unable to breast feed despite trying shields.   Jess had to be fed regularly throughout the night because she was so little.  She was so sleepy that feeding took a long time and I often had to use various techniques to try and keep her awake.   Jess vomited a lot and had tummy problems - she could projectile poo several feet!  After her first formula feed, Jess developed hives all over her body.  The GP diagnosed her with both reflux and dairy allergy.  We were given special formula and I was told to stop giving her my breast milk. The formula was very thin and I had to mix it with thickener to prevent Jess from vomiting after feeds.

 

Meanwhile, I continued to feel very anxious and struggled with the after effects of the CSF leak.  When I visited the GP, I was dismissed and told ‘it was all in my head’.   When Jess was 3 months old I started attending an NCT early days course with the aim of meeting other mums.  I was fortunate to meet a group of lovely mums, some of whom I am still in touch with today.  I still became very anxious going out with Jess particularly due to her reflux and being so little.  

 

Jess was delayed meeting all her motor milestones and was referred to physio at six months old.  She hated tummy time as it often resulted in her vomiting, even hours after her last feed.  Looking back I can see that I struggled with postnatal anxiety.  I felt unable to ask for help from the doctor due to the way that I had been treated in some of the appointments.

 

Jess finally walked at twenty-one months and I had really struggled with her not walking as I was pregnant again by this time.  A miracle had happened! After thinking that it would take another four years and possibly IVF to have a 2nd baby, I was pregnant naturally within two months of trying!  

 

 Jess was frequently ill with croup as a toddler and was diagnosed with asthma.  She was also diagnosed with a hypermobility syndrome and struggled with minor digestive problems. 

Jess is now ten years old.  You wouldn’t know that she was premature now! Having always been very small, she grew a lot around age eight when hormones kicked in.  

 

Are these problems caused by her prematurity?  

 

It is difficult to say.  I feel very lucky that there are no major effects after her difficult start.  

 

It took me eight years and having another child to realise that I was still traumatised by Jess’ birth. I would find her birthday very difficult due to flashbacks of my experience.   I went to a Birth Reflections Service at the hospital where I had Jess and talked through what happened.   This was enough to help me process my feelings related to the whole situation.

 

I hope that this account of my experience helps other parents in similar situations.  I have already helped a few parents with premature babies at my music classes by sharing my experience.