Friday, 23 November 2012

Sarah: The Story of Our Premature Twins

Our story begins on the 20th July 2012. I was 28 weeks pregnant with my twin girls. I had been getting regular pains all day at work (my last day!), but they were not too bad, so assumed that they were Braxton Hicks. In the evening these pains got worse, so I decided to call the labour ward, who advised us to come in to be checked. I had not yet packed my hospital bag, so was madly trying to chuck what I thought I might need in a bag just in case (it was my plan to pack my hospital bag that weekend ironically!). We got to the labour ward and were shown almost straight away into a room. I was connected up to the fetal heart rate monitor where we could hear two healthy heart beats.

I was then examined by one of the midwives, who, to my surprise told us that I was in fact 3cms dilated, with waters that were just about to burst, and the chances were that my girls would be arriving in the not too distant future. I was then put on a drip to slow down contractions and given the first of 2 steroid injections (to help strengthen babies lungs).

At this point it was quite late, so my husband decided to go home for a rest. I continued to have contractions every 5-10 minutes throughout the night, using gas and air as my pain relief. I was then given a second steroid injection twelve hours after the first. Laurie Gatehouse came down from the Neonatal Unit and talked us through what was likely to happen when my twins were born. We were told that I would need a caesarean section due to twin one (Grace) being breech.

At around 4pm on Saturday 21st July, my contractions seemed to get more intense and painful. I was examined and found to be 10cm dilated. Everything then happened in a bit of a blur, I remember Drs and midwives prepping me for surgery. It was very rushed and rather scary! But necessary due to the fact that I was getting the urge to push, which with a breech baby could cause a lot of problems!

After being given a spinal block, twin one (Grace) was born at 18:06 and twin two (Isla) was born at 18:11 using forceps, as she was stuck high up under my ribs! I was told that my early labour had possibly been caused by Isla’s placenta being infected, so the surgeons spent a long time cleaning me up, and all three of us were then given strong antibiotics.

When they were born, Grace needed to be fully resuscitated (scary!) but Isla was managing to breathe by herself. They were both stabilised in the operating theatre, by two teams (one for each baby) of Drs and Neo natal nurses. Once stable, we got a quick glimpse of them, as they were wheeled past us to make their way to the Neonatal unit. We were then told that the nurses would contact us as soon as the girls were settled. This took a few hours, but eventually my husband was allowed to go and visit our daughters (I was bed bound due to the Caesarean, and pretty dosed up on painkillers). My husband returned with a photo of the girls taken by the nurses.



I finally got to meet my babies the next morning, but wasn’t able to hold them until they were 5 days old.

The girls settled really well, and I got down to trying to produce some colostrum for them. After much boob squeezing from both my husband and I, I started to produce colostrum. The process of collecting this was very time consuming! I would be squeezing it out, while my husband sucked it up with a 1ml syringe and then took it down to the neonatal unit for the nurses to share between the girls. After 3 days the real milk came in and I was an emotional hormonal wreck! I just sat on my bed and cried, and when asked what was wrong, I replied “I don’t know!” I was told this is perfectly normal.

After a week or so, the girls were doing really well and were really stable, so they were transferred from the “hot room” (more intensive care) into the nursery. They continued to do well for the next week, both were on optiflow, which uses water vapours to push oxygen into their nasal prongs, making it easier to breathe. Unfortunately they both developed a chest infection, so were put on antibiotics to treat them. Little did we know, things were about to get a lot worse very quickly.

On the evening of the 1st of August, we received a phone call to say that Isla was not doing so well, and had been moved back into the hot room so that she could have a closer eye kept on her. We went in to see her, she looked asleep and settled so we weren’t too worried, so we went home to bed. We then received another phone call to tell us that she had had to go back onto the C-pap , which maintains continuous positive airway pressure in the lungs. We were told to rest, and they would contact us if there were any changes. We then received a phone call at 6am on 2nd August, telling us that Isla was now on a ventilator, and would need to be transferred to a different hospital as they suspected she had Necrotising Enterocolitis (NEC) and may need surgery.

NEC is a gastrointestinal disease which typically affects premature babies. The disease creates both an infection and inflammation in the bowels. The treatment ranges from stopping milk feeds and giving antibiotics, to surgery to remove the infected gut. Unfortunately Isla had an extremely severe form of NEC.

We waited all day to find out where Isla would be transferred to (we were told it could be Oxford JR, Great Ormond Street or Addenbrookes). Finally at around 6pm on the 2nd August, Addenbrooks contacted MKGH to inform them they had a bed for Isla. A transport team were then dispatched from Oxford (where they are based) and they made their way to MK to stabilise Isla for her journey. This took quite a while as they wanted to get a long line in, to make it easier to administer drugs during the journey.

Isla waiting for a bed in another hospital

Isla being transported in a very high tech transport incubator!

We then had to make the decision to leave Grace in MK (still suffering from a chest infection but otherwise stable) and make our way to be with our critically ill daughter in Addenbrookes. When we arrived, the surgeon spoke to us straight away, and told us that she would most likely need surgery to remove the infected parts of her gut. We were told that if they could, they would wait until morning, but if necessary they would have to operate overnight. We were then given a room just down the corridor for the night, where we tried to get some sleep (note the word tried!!) we did not receive any knocks on the door throughout the night, which was a relief!

When we got up in the morning we were informed that Isla would be going down to surgery, and that they were waiting for blood and platelets for her. She was then taken down to theatre, where they operated on her for around 3 hours (it felt like a lifetime!). When she returned, the surgeon informed us that he had had to remove a lot of damaged gut, and what he had left in there did not look great, but if he had removed any more she would have been left with short gut syndrome. We were told that our daughter was extremely sick and the next 48 hours were crucial. We got through the first 24 hours and were told that Isla’s kidneys were not working, which meant there was no urine output and she was swelling up due to fluid retention. It was then suggested that we have a naming ceremony for her, so the nurses contacted the hospital chaplain who performed a wonderful ceremony with all our family around her incubator (except for Grace of course who was doing well back in MK).

After a few days, we finally started getting wet nappies (we were so relieved we even took a photo!). Isla seemed to improve gradually, but seemed to be blocking her ventilator quite a lot. It turned out that this was because she was having fits, and now had a bleed on her brain. We were told that there was no way of telling how much damage this bleed would cause, but there would certainly be some kind of mobility problem for her down one side, due to where the bleed was.

We continued to hope and pray that she would keep fighting and would pull through. Finally on the morning of Thursday 9th August we had a knock on our bedroom door to tell us to come quick. Isla had blocked her ventilator and was being resuscitated. This was successful and she was then made stable again, until a couple of hours later when she did the same thing again. Her consultant looked at us and told us that this would probably keep happening and it was now up to us to decide if we wanted to withdraw her life support. We looked at each other and we knew that this was the end of her fight. We made the decision to turn off her ventilator after one last cuddle with both of us. Isla was disconnected from all her machines (apart from one drip containing morphine to keep her comfortable) and she sadly passed away in our arms, aged 19 days old. Although heart breaking, we felt a strange sense of relief, knowing that our baby was no longer suffering and in pain. Isla’s consultant informed us that her blocking her ventilator was her way of telling us she had had enough.

We had our last cuddles with our daughter and I carried her down to the morgue. We then packed up all our things and made our way back to MKGH where the wonderful nurses had screened off an area by Grace’s incubator for us to have some privacy and to be able to grieve for our daughter. It was very emotional, but seeing Grace helped to keep us strong and realise we had to keep on going for her.

During our week away with Isla, Grace had come on in leaps and bounds and was now wearing clothes and making her first noises!

Grace wearing her first item of clothing!

Grace continued to get stronger and we found that visiting her was really helping with our grief for her sister.

She started to make sucking actions, so I started to put her to the breast while being fed through her NG tube sometimes, so she would associate this with feeling full and eventually latch on. She started to show an interest in the breast but struggled to latch on due to her mouth still being so tiny. I decided to try nipple shields, which were a hit, and on the last day of August, Grace finally had her first feed from me (a lovely end to a terrible month).

Grace was then having 3 hourly feeds, every other feed she was put to the breast so as not to wear her out too much. When I was not there during the night, she was offered either a cup or a bottle of expressed milk. When Grace was successfully taking every other feed either from breast or bottle, she was then moved onto 4 hourly feeds, of which every feed would be breast or bottle with an NG top up if needed. She took a week or so to get used to having to work for her food, but something finally clicked, and we started to hear talk of going home! As Grace was still on oxygen, she was connected up to a downloadable sats monitor, which the community nurses (the nurses that visit when you are at home if you are on home oxygen) assessed and decided how much oxygen she would need to come home with. The oxygen was ordered and delivered the next day and on the weekend of 22nd September we stayed at the hospital for two nights (to get us used to having a baby to get up to in the night and have the support from the nurses if we needed it).

Finally, after a 64 day stay in NNU, Grace came home on Monday 24th September. Two weeks before the twins due date.

Bringing one baby home when you are expecting to bring home two was hard emotionally, but knowing that Grace is getting that much stronger every day has kept us going, and although I still re-live the week we lost Isla and I still cry for her, I know that Grace needs her mummy and daddy to be strong for her. We will celebrate Isla’s life every year on the day that we lost her and we will bring Grace up knowing that she is a twin, and if she ever wants to know, we will tell her the story of how her sister fought so so hard for her life.

Here is Grace aged 15 weeks (3 weeks corrected age) still thriving and getting bigger and stronger by the day.


  1. Thanks for sharing your story your girls are gorgeous. It was beautifully written and brought me to tears. NEC is such a horrible thing and it happens so quickly. Like you said with Isla, with our boys we knew when their fight was over and it was time. I had never even heard of NEC until I had the boys. I hope someday it is better understood and more treatable.
    Big hugs,

  2. Sarah thanks so much for sharing the story of your girls with us. I am so pleased for you that you have Grace, but I know that absolutely doesn't take away the pain of losing Isla. You have been through so much in such a short space of time, and your love for both your little girls shones through your story. Thank you xx

  3. I have just read your story Sarah and wanted to say thank you for sharing it; you were so brave to have shared your experience and I am so glad Grace continues to do well although I understand Isla's loss is in no way lessened by this xxx