I never thought I would say that the last time I feed my son, would actually be the hardest. I remember the agony of feeding him in those first few weeks; I had the bleeding nipples and the rock hard boobs that would make me shudder if brushed against clothing. Learning to breastfeed was not easy and yet feeding Kobe for the last time feels so much harder.
I was put on medication called Hydroxychloroquine during my pregnancy with Kobe. It is a medication that aims to suppress my immune system, as it was my immune system that had attacked Holly’s heart. Outside of attacking an unborn baby, these antibodies primarily attack my secretory glands but can actually attack any organ in my body. For the entire 36+5 weeks of my pregnancy with Kobe, I wasn’t poorly once. This medication was working for me and it was the first time in many, many years that I actually felt well.
I hadn’t planned on breastfeeding Kobe because of the difficulty I’d had trying to feed Eleni. I was worried about what impact it would have on my mental wellbeing but as soon as he had been born was brought to me on that operating table; I knew that I had to try. The only problem was I couldn’t continue to take the medication whilst feeding as there were risks of it causing visual defects for Kobe.
However, I wanted more than anything to put my baby first and so I did. I never had the chance to breastfeed Holly, so when Kobe was born I felt so desperate to give him everything that I could. We got through those first few weeks of breastfeeding and before I knew it, we were just breastfeeding and it felt amazing. It was our little relationship and I would cherish every moment of it. My confidence grew as we fed in public and I became so proud of the both of us.
As the weeks went on, my Sjogren’s was started starting to lift its nasty head again. Muscle aches, kidney stones, swollen parotid glands, eye pain, nose bleeds, ulcers and stomach pain to name a few. I spent weekends just lying in bed, willing for all this pain to just go away and wishing for this Sjogrens to stop taking over my life.
Kobe was starting to feed less from me, only really once a night but yet I still didn’t want to give up feeding him. I didn’t want to have my Sjogren’s take away yet another thing from me. It felt bad enough that it had stolen Holly; did it really have to keep stealing moments from me now too?
A few days ago I ended up in hospital yet again. Diagnosis being Pleurisy, with a common cause being autoimmune diseases i.e. my Sjogren's. I’ve hardly seen my children in the last few days as I’ve been in bed recovering and it wasn’t until a friend said this, that I realised what needed to be done:
“Kobe and Eleni need a healthy mummy.”
Shit I thought. It is time to get back on those tablets isn’t it?
I wasn’t ready to stop feeding Kobe because I know that I can never have another baby and I will never get to breastfeed again. I don’t know if that makes me sound selfish but I was trying so very hard to not be selfish by stopping my own medication to give Kobe the best milk possible. But somewhere along the way, I think I started needing to do it more than him. I’d an entire future with Holly ripped away from me that I just didn’t want this to end with Kobe. There is something about having a rainbow baby that makes you want to stop time from moving on, to cherish every moment and just be a mummy.
Sometimes, I just can’t stop being mad about the power that Sjogren’s has over me but I know that I have given him my best and now I need to be my best. Sjogren’s has stolen a hell of a lot from me but I will try my best to not let it steal any more of my future.
13 months feeding my little Kobes but a lifetime of memories. I have to just keep telling myself that I am lucky I had this chance at all.
I had expected to feel much more relaxed after we knew that our baby was safe from complete heart bock at our 29 week scan and whilst that was true on many levels, I was completely unprepared for the continuous and deepening anxiety that was rapidly escalating. I became obsessively paranoid over our baby's movements and whilst I wouldn't necessary expect this to be a bad thing, it was taking its toll on my mental health. You see, although over coming heart block was a massive challenge for us, my understanding of reality had now changed. I had gone from barely knowing anyone whose baby had died to knowing (on a personal level) hundreds of babies who had died for hundreds of different reasons, and at different stages in pregnancy and after birth. I felt all too aware that there was no guarantee of bringing our baby home, heart block or no heart block.
So the paranoia took over, my anxiety medication was increased and I spent many hours at the maternity day unit being monitored. Whilst our baby's movements almost always gave a perfect trace, my answer to the question post monitoring, 'are you happy with baby's movements now?' was always going to be 'no.' I was never going to feel reassured that my baby's movements were okay until he was here, alive and breathing because no amount of movements was ever going to reassure me that this baby wouldn't die too.
The two weekly scans continued with a few extra scans thrown in here and there for reassurance. I was desperate for an induction date because I needed to know when this turmoil would end. I needed my baby here now and opting for an induction was my way of trying to regain some control in the pregnancy. My anxiety worsened until another episode of reduced fetal movements saw me being seen by my consultant who decided to book me in for an induction the following day. I was 36+4 and finally I dared to dream that we could be meeting our breathing baby that weekend.
Throughout the entire pregnancy I had been terrified of giving birth again. I'd had an epidural with Eleni, my first, and so other than feeling some pressure down below, the actual birth was not painful. Holly's birth however, happened so quickly that I felt it all and to this day I still do not know if the agony of knowing she was dead made the whole birth feel more 'painful' than it would have been in other circumstances. Holly's birth had traumatised me and I was scared to give birth again. I was therefore pretty certain that I would chose an epidural for the upcoming labour as I knew that I couldn't go through feeling it again.
It wasn't until we started the induction procedure that the extent to how Holly's birth had traumatised me became apparent. I could now barely manage internal examinations without crying out. I really struggled to not associate any feeling down there with the pain of losing Holly. I didn't know if it was physically or mentally hurting me but I look back now and recognise that I was experiencing PTSD. I am not sure I would have thought about internal examinations being traumatic for those whose previous baby's had died, during my career as a midwife. I would have probably carried out examinations with a usual amount of care and dignity without really thinking about any potential triggers or understanding how real the emotional trauma would be. The trauma is so real though and even now the thought of Cervical screening fills me with a similar amount of distress and whilst I will always have screening done (I have fought far too hard to have my babies here to then leave them), I think it is so important that triggers and PTSD is understood by ALL healthcare professionals...
So my induction procedure started but unfortunately after 3 doses of Prostin, my body was just not ready to go into labour. The doctor came to see me in the early hours of the following day and offered a 24 hour break followed by a repeat of the induction procedure or a Cesarean Section. My husband had gone home at this point but instinctively I knew I wanted the latter. I was emotionally, mentally and physically exhausted. I had been experiencing irregular contractions for almost 24 hours but more painful than that was the ongoing worry. I just needed my baby now.
As I was being prepped for theatre, the midwife who I'd had the previous day came onto shift. She hadn't acknowledged Holly the day before, she had only briefly acknowledged a previous loss. Whilst some people may say that 'no one really knows what to say in this situation' I stand up and say 'talk to me about what happened before and acknowledged that it matters'. This was a prime example of why I blog and why I talk about Holly. A simple question of 'would you like to talk about what happened with your baby' and 'how are you feeling right now?' could bring so much support to a situation that is as scary as fuck. I hated that Holly's name was not asked for and the lack of empathy towards the struggles we may experience in delivering this baby was just such a shame.
Unfortunately the lack of understanding continued as upon hearing that I had opted for a c-section, the midwife began arguing with the doctor (who had come back into the room at this point) saying that it was ridiculous to offer a c-section. She walked out the room shaking her head before telling me that 'this isn't what most people would do.' I didn't let myself get upset by her as to be honest I had bigger things to think about but it was just so disappointing. Being a midwife I was well aware of the risks involved with the surgery and I would never make the decision lightly but I had my reasons. I needed support and empathy not judgment or comparisons. Luckily, I had the most wonderful ODP keep me calm during the c-section. She asked me about Holly and was so understanding. I am so thankful for the kindness she showed.
Three attempts at a spinal later and we met our beautiful baby boy. I couldn't possibly describe the love and the relief that I felt. It was just the most beautiful moments of my life.
Despite the fact that I was recovering from painful surgery, the two days in hospital were the most calm my mind had been in almost a year. They were the most beautiful days were I began to get to know my son and I cherished every second because I understood all too well how easily it could be taken for granted. I thought about Holly so much in those first few days and those thoughts were filled with so much love for her. Kobe was her parting gift to us.
I chose not to sugar coat anything in this life after Holly because life is too short and far too precious to waste time in not telling the truth, especially when the truth can help others. My rainbow pregnancy was hard, scary, upsetting, full of triggers and mentally tiring but it was worth it because our children are always worth it. I am so lucky that I got my rainbow and I won't ever lose sight of how fortunate we are.
I will always be protective of Kobes. He is the baby that made it and the baby who was born out of a sisters love.
He is my rainbow.
You never really think that growing a baby should be difficult, do you? I mean, sure you accept it will uncomfortable at times and you expect sickness etc. but once you've reached that 12 week scan, you are safe right?
Growing a baby feels impossible after you've lost one. The anxieties over ever twinge feel multiplied in a rainbow pregnancy. You no longer believe that your pregnancy is 'safe' and instead have a real belief that this baby could die too.
After our first cardiac scan at 16 weeks, I had a real desire to see my baby where there was no focus on the heart or things that could be wrong. I just wanted a little slice of 'normal' for my baby. So we booked a private gender scan at just over 16 weeks. For the first and only time since Holly's ashes came home, I took her little ashes teddy bear with me to the scan. There was no way that I was going to find out what we were having without her there with us.
Up until the gender scan I had desperately wanted the baby to be a girl. It hurt so much to see little sisters together and I wanted Eleni to have a little sister here on Earth too. It took almost an hour to see our baby's gender as the cord was between its legs but finally we were told, it was a boy! In that instance my heart exploded with love for this little lad and it just felt so right. A new pregnancy, a new start, not another little girl to take Holly's place but instead a little boy with two wonderful big sisters. I drove home and cried. It was just perfect and I was so happy I'd had one normal scan where I could just watched my baby with no focus on his heart.
Unfortunately not all scans were filled with so much happiness.
Growing a rainbow baby takes a massive amount of strength. It requires a lot of love and patience from the people around you and an incredible amount of support and understanding from medical professionals. A rainbow pregnancy is more than just a little testing on your mental health and there can be serious consequences if any of your support areas are lacking. I was receiving brilliant healthcare support from midwives, doctors and consultants right up until my 20 week scan. We found out that Holly's heart was poorly at her 20 week scan and so understandably this was the scan where I felt a massive amount of panic and worry.
Unfortunately the sonographer we had at our 20 week scan was less than empathetic. I had a stillbirth sticker on my notes and so I am sure she was aware of my history but she still proceeded to abruptly tell me to lie down and not talk during the scan. She rudely told my husband not to talk to me and even that I shouldn't talk to Eleni. Maybe she was just trying to concentrate but in an instance I had a flash back of lying in the Evelina Hospital in pure silence when Holly's poorly heart was diagnosed. I asked the sonographer if she could look at our baby's heart first as that was obviously our biggest worry. She said no. I cried silently during the scan, it was just traumatic and horrific. At the end of the scan I asked if everything was okay and she mumbled 'okay, I am getting you into see the consultant now.' What the hell did that mean?! Was something wrong with our baby?!
Our consultant promised us that our baby's heart was looking fine but for every scan after, I refused to see that sonographer again. She showed zero compassion and understanding of life after loss. It made me think, shouldn't sonographers be educated in stillbirth awareness too? I think any staff who comes into contact with expectant rainbow parents should absolutely be trained in understanding baby loss. Our 20 week scan was so much more stressful and upsetting than it should have ever have been. I went home and slapped another stillbirth sticker on top of my notes.
I had started to feel baby move just before 20 weeks and soon realised how my experiences with movements were a different experience in a rainbow pregnancy. With Eleni, I had hated feeling her move. I found it painful, strange and uncomfortable! I am not ashamed to admit that I just didn't like it! With Holly however, she moved so little that it never really got going and I spent her last few days not wanting to feel her move because of the upcoming reality of ending the pregnancy. This baby was different though. I loved every feeling every single movement, it made me feel so close to him and I truly cherished every second. I had a morning routine of listening to his heartbeat on the doppler and then waiting for movements before I would get out of bed. Mornings always felt nerve wracking and this little routine was the only way I could get through the day.
We were given the date of our final cardiac scan to be the 4th July, I would be just over 29 weeks. The electrical conductive systems within any baby's heart aren't fully developed until this point which is why we couldn't get an all clear until this time. I counted down the days and the weeks which were busily filled with scans. Every scan, baby was looking well and so I tried to stay optimistic. I went shopping with my mum and my sister and finally bought some baby clothes. I no longer cared about tempting fate, I just wanted to give this baby the attention he deserved. I was desperate to grasp any normality during the pregnancy and baby shopping at around 25 weeks was the first time I had allowed myself to have a little faith.
Prior to August 2016, I had never heard of Complete Heart Block but quickly it had become my world and my nemesis. We had to endure losing our precious daughter to such a devastating condition but also understood that any future pregnancy would have a very real chance of developing it too.
205 days we had to wait for a final diagnosis, 205 days of intense anxiety mixed with a broken heart. As I lay down for my scan on the 4th July, silent tears rolled down my face as I watched the familiar routine of a cardiac scan. Watching the little heart and praying that this time we would be okay. "The heart looks perfect and we won't need to see you again." Tears and tears of relief that finally we could close the door on heart block, stamp on its ugly existence and throw away the key forever. Tears of devastation that this wasn't our Holly's outcome, that she wasn't so lucky and still so sorely missed.
I had never liked the term 'Rainbow Baby' up until that point but then I understood. The storm was never Holly, the storm was the Complete Heart Block and on that day the storm had been lifted. On the 4th July we learnt that our baby was safe and I will always be forever grateful to our little guardian angel who looked after her brother.
The hardest part to our journey was over but losing Holly had opened me up to the world of baby loss. The reality that babies die at anytime in pregnancy and soon after birth felt real and scary. We had over come our biggest battle but we still had another 10 weeks until I could hold a baby, with a perfectly beating heart...
My husband and I decided early after Holly's death that we would try again for a baby. The way we saw it, whether we tried now or in 5 years, the worry would still be the same. Whenever we fell pregnant we would still have a 20% chance of another baby with a poorly heart like Holly's. I had decided to take my full maternity leave with Holly and so decided if I was going to be pregnant again, lets do it whilst I was not working and had one less stress to worry about.
We are lucky that we don't struggle to fall pregnant. Holly died in the September and on December 10th I discovered we were pregnant again. I cried with relief at seeing those two little pink lines. This baby was never going to be a replacement for Holly but instead, another much loved sibling for Eleni. I remember sitting in the car with my husband and letting our imaginations run wild. It was the first positive news that we'd had in four months.
That evening I started bleeding and that was the end of that.
One month on and we saw two new pink lines (I told you we fall pregnant easily) but this time there were no tears of relief and no excited smiles. We didn't dare let ourselves believe that this baby was going to actually stick around. Our minds were very much focused on our raw grief for Holly and the previous months events meant that we purposely didn't allow for this new pregnancy to have much time of day. The recent miscarriage had just been another kick in the teeth that this time we didn't dare feel hopeful that this one would live. In all honesty, I wondered if I was capable of carrying a live baby anymore.
We made an early doctors appointment as I knew from our post mortem consultation that I would be going onto medication in a subsequent pregnancy. We saw a consultant who immediately put me onto an immunosuppressive drug called Hydroxychloroquine. The cause of Holly's poorly heart was the presence of specific antibodies in my blood. The antibodies normally attack secretory glands (Sjogren's Syndrome) but in pregnancy they attack the baby's developing heart. This medication was hopefully going to suppress these antibodies from doing it again. Additionally, I was put onto a daily dose of Aspirin, Vitamin D, Calcium and Flucloxacillin for my recurrent urine infections. We maxed out all the doses in the aim of giving this baby the best chance possible.
We were to be under the care of the hospital where I had Holly and the Evelina Hospital in London as they specialise in heart conditions. The plan was for 2 weekly scans to commence from around 16 weeks to observe for heart block. Cruelly, heart block can't be picked up on scan until 16 weeks and can actually develop any time up until 30 weeks gestation. It was going to be a very long journey and a case of one scan at a time.
We chose to not announce our pregnancy on all platforms of social media and I decided not to blog about the pregnancy either. I wasn't worried that we would 'jinx' the pregnancy as I had gone past the point of believing that a pregnancy announcement could be the cause of heart block. Instead, I felt that I needed to keep a safe and separate place for Holly. For a long time they felt like two separate parts of my life and I felt uncomfortable in merging them.
I think part of me must have been worried what people would think about another pregnancy. I wasn't worried that people would think it was too soon or that I was trying to replace Holly but I just worried more that a focus on a new pregnancy would mean Holly being forgotten. I didn't know if this new pregnancy would end in a live baby and so back then, I couldn't give it my time that could have otherwise been used remembering for Holly. It was just another bizarre way in how my grieving mind decided to cope.
I very quickly realised how different this pregnancy would be to my pregnancies before Holly's death. Gone were the hours browsing pregnancy announcements ideas on Pintrest and gone were the daily checking of the pregnancy app to see what was happening that week in the pregnancy. Instead, announcing the pregnancy was now met with worried faces because the people who loved you wanted to protect you from more pain. The pregnancy was so very, very wanted but so very, very scary.
We reached the 12 week scan but what formerly felt as the most nerve wracking part to our previous pregnancies, now felt unsurprisingly manageable in comparison to what we knew we were up against.
Our rainbow journey had begun and all we could do was hold onto as much hope that our grieving hearts could muster..
To my son, my rainbow
Just 4 weeks ago you entered the world and became part of our loving family. Of course, we had been expecting your arrival for quite sometime but still nothing could have prepared us for the light you would bring into our lives.
You were so very wanted.
Pregnancy after loss is a bizarre, emotional and anxious fueled time. It is bittersweet, tiring and yet so full of love and hope. We were told when we were still pregnant with your big sister Holly, that any future pregnancies would carry a 20% chance of heart block. It is a terrifying statistic and whilst most people will tell you that 'the odds are in your favour' they haven't walked in our shoes when the odds of Holly ever being poorly was only 1 in 20,000. Odds and statistics don't mean much when your heart has already been broken.
We wouldn't know if you were clear from the dreaded heart block until 29 weeks gestation so we didn't announce the pregnancy on all platforms of social media. We kept it to just a few, where we knew of people in similar situations who could support us on this journey.
I wondered if people would think I was trying to replace your sister. Or if they would think that your arrival would 'make everything okay' and I would then be back to my 'old self'. I knew none of those things would be true but it was yet another learning curve on this life after loss spinning wheel.
I made sure to cherish every time you moved inside me, knowing that I had felt Holly so little. I started to prepare for your arrival, going against the 'I'm not going to buy anything in case I jinx things' as I so desperately just wanted to feel normal. After all, I was sure buying you clothes wouldn't be a cause of heart block.
None of it was easy. Your daddy and I spent hours sat in the day assessment unit worried about your movements, I would stay awake for hours at night checking you were kicking me enough. I would listen in to your heartbeat, sometimes more than once a day to listen for any signs of a slowing heart rate. It was exhausting.
Somehow we made it to 29 weeks. We were told your heart was healthy. I lay there with silent tears falling as I had done just over a year before when we were told your sister was so poorly. Tears of relief, tears of love and tears of sadness that Holly couldn't of had this outcome.
Your early induction date came, I was too anxious to carry on with your pregnancy any further, knowing that I could take better care of you on the outside than on the inside. You were born, you were pink and you were crying. I sobbed. You were here, you were safe and you were breathing. My heart felt love.
I have been asked if you have helped with my grief of your sister. I think you have just made me love her more and maybe that extra bit of love diminishes a slight bit of the pain. I wish I could have you all here but instead a very special part of Holly will always live on in you. You are Holly's gift and a beautiful reminder that she existed.
We made it little one. We slammed the door on heart block and you have now taken a piece of my heart. Welcome to this crazy, mad world my little rainbow. May you always know how loved you are.