This is Kay and Alex’s story of carrying a premature baby. She tells us about their lives together and what role slings have played in their rocky journey. It is a truly inspiring story of great courage and endurance and I am honoured to have played a small part.

 

“For as long as I can remember I have wanted to be a mum, but my real journey to parenthood started 5 years ago. I decided that I didn’t want to wait for the “right person” to come along and started looking into fertility treatment for single women.  Unfortunately the process wasn’t was easy as I expected; after lots of tests and surgery I discovered that I had endometriosis which may affect fertility..

I started out doing IVI with donor sperm but after two attempts with no success it was suggested that IVF might have a better chance of working. I decided to take part in the egg-sharing programme to reduce the cost and hopefully help someone else too. During this time there was a lot of compulsory counselling to ensure I was aware of all potential outcomes. I’m very lucky that I have a fantastic support system of family and friends around me, especially my parents.

The first attempt at IVF was not straightforwards, I got 14 eggs, (7 of which were donated), but only one was fertilised. This was put back and I got a chemical pregnancy but miscarried. I also got a relatively rare condition called Ovarian Hyperstimulation Syndrome (OHSS) which made me really ill and I had to be hospitalised on numerous occasions. Due to the poor fertilisation rate it was thought that I had poor egg quality so had to pay the full cost of IVF treatment (as a single woman I was not entitled to any NHS treatment.)

On the second IVF attempt, medications were reduced to try lessening the risk of OHSS but because doctors were anxious about this, the egg collection was done too early and 5 eggs were lost during retrieval. This attempt was unsuccessful. I again got OHSS but much milder this time. The emotional rollercoaster or IVF is unimaginable and the hormones of treatment don’t help! You spend all your time so focused on preparing to become pregnant, trying to stay positive, eat well etc, then once the embryo is implanted you have the longest two weeks praying you are pregnant and counting down to the day you can take a pregnancy test… but as soon as it is test day comes you don’t want to do the test because you are until then “Pregnant till Proven Otherwise” ( PUPO). Internet support groups become your sanctuary because others undergoing IVF can understand what you are feeling, while your family and friends sometimes don’t understand why you put yourself through so much. IVF became my only focus.

After the second attempt I had an eight month break to save up as I had used all my savings. I decided that the next would be my last attempt and I would do everything I could to try to help it work so I would have no regrets. I changed my diet (cutting out all processed food), saw a nutritionist, had regular massage (including Mayan abdominal massage) and acupuncture. We changed the IVF regime to one that had a higher chance of success but also a higher risk of OHSS. It was a risk I was willing to take. I had partly given up hope of this round working, as I got two fertilised eggs out of 19 when I began getting the OHSS symptoms again on day 2.

I did a home pregnancy test two days before test day….. and it was positive!

I didn’t know how to react, so burst into tears before laughing maniacally then calling my best friend and my parents. The excitement wore off quickly though when I was admitted to hospital with OHSS at just 4+1 weeks. At a point when I had hoped that the hard part was over, it turned out that this was just the beginning of another difficult journey.

At 18 weeks pregnant, I began getting tightenings. As a midwife, I knew that Braxton Hicks could start early, so I just assumed it was this. though I also worried it might be something more. At 19+4 with continued tightenings, I was seen by my consultant for review and thankfully everything looked ok and possibly just a urine infection causing all this. I was reassured two days later when I had my anatomical scan and everything looked good with a healthy active baby.

I continued to have tightenings but tried to ignore them as everything else seemed OK. Then exactly two weeks later after my scan at 21+6, I started with the smallest amount of bleeding. Again I was reassured as baby seemed OK and it had settled, possibly caused by a cervical erosion, and just to observe. I continued spotting on and off but nothing major, until I was at work on a shift on labour ward at 23+1 weeks pregnant.

I had a significant bleed and was terrified. I felt it was too far on in the pregnancy to lose the baby now but it was far too early to be born. I burst into tears. I am so grateful that I was at work surrounded by fantastic colleagues. I was admitted to the antenatal ward for observation overnight and I didn’t go home again.

I continued to have tightenings and bleeding to varying degrees over the next three weeks. Getting to 24 weeks was a major milestone and I was given steroids to mature the baby’s lungs. At around 25 weeks my waters went though because of the bleeding it wasn’t obvious. Baby was breech and because of the situation I kept being told I might be taken for a Caesarean if bleeding increased or I went into labour. I saw paediatricians who told me stark statistics about survival rates and disability. As a midwife I knew these things but as a mum it just didn’t sink in. I was tearful and losing hope. At 25+5 I had a major bleed that got me taken to labour ward and starved in case it continued and and I needed theatre. I spent the next two days in high dependency being observed and in denial.

Writing it down now it seems so silly but even given the bleeding, tightenings and water break it still never clicked to anyone that the pain I was in could be labour. At exactly 26 weeks I was found to be 7cm dilated. Two hours later I had a vaginal breech delivery complicated by the head getting stuck.

Alexander Benjamin was born weighing 1lb 12 oz and in a very poor condition.

The room was full of people but no-one was saying a word. Looking back at his notes now it says it took 18minutes to stabilise him before taking him to intensive care but it didn’t feel that long to me. It seems awful to think about it now but at that point once Alex was born all I felt was relief. I was glad the pregnancy was finally over after months of feeling ill and stressed. I had spent the last few weeks trying to detach from the pregnancy as I feared the worst, but in the moment when Alex was taken away and we (myself, my parents and my friend) were left alone the silence said it all.

I know it can often take up to an hour to get a baby settled into neonatal unit with all the lines, Xrays etc so we patiently waited. After nearly two hours I went to ask if we could see him.. the midwife came back saying the consultant wanted to come and talk to us first. I know the language of medical professionals and I honestly thought we had lost him. The consultant came round and told us that “Alex is a very sick little boy” and that the first 24hours would be critical. I think the adrenaline stopped me from feeling the full effects of the situation but looking back now at pictures and videos of those first hours has me choked up. Alex was beautiful to me, but so frail. You can count every rib and due to the manipulation of delivery his leg is almost black with bruising. He was covered with monitoring leads and various IV lines plus on a ventilator to keep him alive. He was put under phototherapy immediately.

Only I was allowed to touch him but couldn’t hold him yet.
My first hold came on November 17th, aptly, World Prematurity Day. I was nervous about pulling a line or hurting him but also so excited to hold him! He was put skin to skin down my top and his ventilator tubes taped to me to keep him safe. I can still smell him now and it brings me to tears. As a parent you take for granted the milestones you will see; the birth experience you imagined, the crying baby just born and put skin to skin at once. I didn’t get these, and my milestones with Alex are different, but even more amazing after the challenges he has faced. We spent 135 days in the neonatal unit and I was there 12 hours a day for 133 of those days. (Two days I was ill from sheer exhaustion and wasn’t allowed in.)

I spent my time holding Alex as much as I could and when he was too poorly to be held I touched him through the incubator and spoke and sang to him. I felt being physically close would help us both bond better, especially after an awful pregnancy and so much separation. I was already aware of the Sheffield Sling Surgery due to friends attending and had contacted Rosie early on in pregnancy as I had planned to carry my baby in a sling. Once Alex was over the first big hurdle of coming off the ventilator at a month old, I got back in touch to find out if slings could help us while still in the NICU. The physiotherapist on the unit was very in favour of using slings and gave me a Vija top to try, but I felt it was more comfy just using my strappy top as we got so tangled with the wires.By the time we moved to HDU it was a slightly more relaxed environment with staff that seemed more in favour of breastfeeding and skin to skin. I decided, after discussion with Rosie, to buy my first sling, a Hana stretchy wrap.

It felt complicated at first getting used to the technique of wrapping and because of all the monitoring it would often take someone else to help me get all the wires sorted, but once Alex was put into the sling he fell straight to sleep. I noticed that often his heart rate and oxygen sats would improve too and it made me even more determined to keep him close.

Our journey through special care gives me mixed emotions. On the one hand I would never wish this experience on anyone. The constant stress, not just for myself but also family and friends around me. The fear that if I leave, something might happen. Every time the phone rang panic would set in and don’t even get me started on the paediatricians coming up to the ward!

However, my life has changed completely in so many good ways. I have realised and experienced how fantastic the care is from my colleagues. I have become closer to my family and friends and I love watching my parents with Alex. I feel I will be an even more sympathetic and understanding midwife and I hope my practice will change to support women who go through similar experiences. Most of all I have realised my dream of becoming a mum and to the most incredible little fighter I have ever met.

 

I feel I have a strong bond with Alex and many people have commented on how well I can read him. I believe it is because of staying close to him as much as I have and having him in the sling has facilitated this.

Alex has Chronic Lung Disease and came home on oxygen in March. He is doing incredibly well on the lowest level now, but transporting the oxygen has been a bit of a challenge for me. The canister is heavy and the container rucksack has narrow shoulders so has hurt my shoulders; trying to balance that weight against Alex has not been easy. At times I have felt isolated simply because of that. However I have met some wonderful people on my journey through special care and in the sling community (often the two groups mix!) and we wouldn’t be where we are now without these challenges.

We are still using our Hana wrap, and I’ve been trying out a snuggly Sleepy Nico! I’ve learned how to use woven wraps; we are beginning to back carry; the end of the oxygen is in sight! Time to tuck Alex up into the Sleepy Nico and reconnect after a long day.