Trans dads to our rainbow: Nico's 1st anniversary

Our Angels first heavenly birthday.

Trigger warning:

Talking about losing a baby,- Miscarriage
Death.
Mental health
Includes Photo of our son at 16 weeks.

In memory of our son. Nico Joyce Lewis-Evans

It is a year today that our son Nico Joyce became an angel on the 29/08/18, the day our hearts broke and a piece of our souls went with him. I wanted to just share about how we lost him and why it happened. Mainly to celebrate and share his memory but also to highlight the importance of awareness. Miscarriage and stillbirths are very common and not really spoken about because of this negative stigma. Lets break it, speak out about your story and journey lets not forget those precious babies that where too perfect for this world and lost too soon.

I know on my other blog about our pregnancy with Nico (see link at the bottom of this post.) I wrote about what happened on that day but did not go into detail about the postmortem or what happen after his death. I will discuss this, to spread awareness about infections and incontinent cervix in pregnancy. That it is common to get infections, mostly they are easily treatable if, it is detected early. Thus I will talk about how to get checked and support that is out there before, anymore babies have to be lost because people do not realise what to do.

It has been a rough year, we are both doing better emotionally and now able to talk about Nico more, and to celebrate his life. However grief never goes away, you do not just get over it. Despite being told my many people including family that we can just have another baby, that it will be fine and to just move on. No we can not just replace our child! We can try again when we are both ready but it is not as simple as just having another baby. We need to be mentally as well as physically ready. Yes we are having another baby after a year but it took a lot of time and grieving and anxieties to try again. We wanted to add to our family, by no means replacing Nico in any way.

This type of grief especially is a difficult one that stays with you forever, like there is a whole inside that will never be filled. It does get easier to a degree, being able to manage day to day. While living in this shadow waiting for the next thing to go wrong. There is some harder days when everything reminds you of the loss or when we are going about the day then a shock hits and your taken right back to that day he passed. It feels like walking into a wall, there is a wave that sinks your heart, a pain I can not describe. Sometimes this can be trigger by a memory, hearing his name, watching or reading about others losing a baby or it can just happen out of nowhere for no reason.

That being said we have come a long way in this year. When we first had Nico, I honestly did not know how to feel. I was numb and lost. Ben was so depressed, lost and broken, I hated watching him in pain knowing there was nothing I could do. I just concentrated on looking after him and doing all I could to ensure he was safe. I really struggled as everyday I was terrified I would loss him too. He was at breaking point, not only physically with losing so much blood, being rushed into theatre and having a blood transfusion, but also mentally he really had given up.

However hard as it was we had each other and I am thankful for that, as well as support we got from friends. Ben and my relationship did get effected a little, as I keep myself busy and throw my energy into work. where as Ben pushed me, well everyone away and got distant. Despite this we are so strong and had gone through a lot already so we were not going to let this break us. In the long run we were able to really connected and it made us stronger. Losing a child can either break or bring people together. Nico certainly brought us closer and gave me and Ben a connection which will never be broken. We will always have him keeping us strong.

After a few more months, we got his postmortem back and had his funeral to finally put our son to rest helped. We were then able to grieve for him, as well as look to the future. We will never replace him nor forget him. while we still wanted to try again, adding another baby to our already unique family. Nico will always be our first born, our son and a big brother.

After the postmortem and the new year we planned to try again as we knew that Ben was able to have another baby. We found out it was nothing to do with him or anything we did wrong. In fact it was a very common infection that could have been prevented, if only the doctors had listen to us weeks before, when Ben was ill. However we had no knowledge of this infection which was Bacteria Vaginosis (BV). It is not regularly checked for in pregnancy and can be harmful when not detected or treated. While with a simple swab test and antibiotics it is treatable and easily avoided. The specialist told us that there is a low chance to get the infection again in a future pregnancy and if we do we can be treated early and monitored, that it is very unlikely to have another miscarriage.

I will explain what BV is and how it is test for and treated. That due to knowing the cause with Nico passing, we have had more tests and check up in this pregnancy with rainbow. Along with other tests, which gave us even more knowledge into why we lost Nico from such a harmless common infection. This was in-conjunction with having a short cervix. I will talk about how these two things are linked, even though not many professional will make this connection. We are just so thankful that we had an amazing team and a specialist who was able to support us.

What is BV?
Bacteria Vaginosis is an infection in the vagina, that is caused by a bacterial imbalance. This happens when you do not have enough Lactobacilli, referred to as friendly bacteria. This is acidic and prevents unwanted bad bacteria to grow however when someone has BV the bad bacteria then grows because of the lack of Lactobacilli. Pregnancy makes this more common because of changes in hormones. BV can cause an increase in discharge but does not really present any symptoms. Also it is quiet common to have increased discharge, therefore BV can go undected.

BV is tested by a simple swab of the discharge in the vagina. Most people will only realise they have it when having swabs for something else, like thrush. If you do have any grey yellow discharge that has an slight odor or your normal amount of discharge increases make sure you get checked. Especially in pregnancy, do not assume it is just normal pregnancy symptoms it could be but there no harm to get tested if you are worried. It is not a routine check during pregnancy however I think it should be. BV is unlikely to effect pregnancy and as I stated it is very common to get this in pregnancy. Although it can cause complications if left untreated or people are unaware they have it. these include:

Going into labour early- preterm.
Causing miscarriage or stillborn
Having an infection in the womb after birth.

A simple swab test and antibiotics can prevent this.

Nonetheless this was not the case for us. Ben had BV and it was not detected. He has no symptoms, no discharge, nothing. He was ill a few weeks up to us losing Nico however as I had a fever and chest infection. I was hospitalised on a drip due to being dehydrated and my asthma being effected. We had the ambulance out and kept going to the GP for Ben as he just knew something was not right. He was getting no sickness or pregnancy feelings but was ill and getting bad cramps. The doctors did not even take blood, swabs or test his urine. They just said he had a chest infection and it would not harm the baby. While we and the doctors assumed Ben had just caught my chest infection, now we believe it was his body fighting this infection.

It was not until later at the Nico's postmortem that we found out Ben had BV. We were told that it is normally harmless without symptoms however this caused a E-coil bacteria to get up into his womb and was in the fluid surrounding the baby. Nico was swallowing this bacteria in the waters, which lead him to get pneumonia. This is an infection in the lungs causing coughing, fever, chills all the symptoms Ben displayed however it was the baby who had the illness. This caused Ben's waters to break at 16 weeks and we lost our baby. He was born at 16 weeks 3 days sleeping, he was an angel before birth.

Knowing this we made sure that in this pregnancy we got tested for BV, Ben got tested and treated after these postmortem results. Then again when we first got pregnant where he was all clear. At around 8 weeks he had a slight bleed and showed slight bacterial change on a swab test so was put on the antibiotics to do safe. Ben got tested a few times throughout the pregnancy to make sure it did not return even though we were reassured by our specialist that it was very unlikely to reoccur after treatment.

Our specialist also order for cervical lengthening scans (I have spoken about this in previous post) but I have not explained fully why he got them. So in most cases BV does not effect pregnancy, people can have it and not know about it and it does not usually cause any harm. But it had got up into Ben's cervix and waters therefore our specialist made the connection that his cervix must have shorten to allow the spread of the infection up to the womb. He told us not many people realise this connection until they lose even more babies. This meant that despite he infection Ben cervix would have shorten and it could have still resulted in complications, with the loss of our baby. Realising this our specialist wanted to check Ben's cervix every 1-2 weeks from 14 weeks. The shortening or opening of the cervix pre-term, before 37 weeks is called inconstant cervix. I have discuss what IC this and why it posses risks, so please read previous posts, I will link them at the bottom.

We did already have some knowledge about IC because Ben's cousin had it, we did join online groups and talking to others who had IC as well. We found that it was very common, lots of people had lost babies because of this or because of the infections that can be caused by it.

Again IC it is not something that is routinely checked for in pregnancy and should be. There should be more awareness and tests in place to prevent the loss of babies. That someone could be checked and treated before having to go though the pain me, Ben and many others have experienced. To reduces the pain of grieving parents and save more lives. All with a simple scan, and swab. In regards to this as it is not checked for routinely we want to spared the awareness of making sure if you suspect something is not right, as you you know your body best. Even if you feel your annoying medical professionals just know your doing the right thing by getting checked. Even if there is nothing wrong but if there is, you can catch it early. If we knew more and got swabs done or Ben's cervix checked, maybe our son would still be alive. But we did not know about any of these complications. Now that we do know, we have fought for tests, checks and did anything we needed to make sure this baby is fine. Please follow you gut, make sure you stand up and get the care that we deserve.

Thought out this pregnancy we have had worries and scares with infections early on, some spotting and also reduced movements. I have explained these in previous post but not really spoke about how that truly feels when you have had a previous loss. Everyone worries and has these scares in pregnancy however when you have had a miscarriage, stillborn or lost a child soon after birth, you worry even more. We were not able to bond with this baby or get excited until recently. Even when we got past 16, then 24 and now 28 weeks it does not get better. We will have this worry and fear until this baby is alive in our arms. Although we are getting nearer to the birth and in a safer gestation in terms of survival rates it still feels like a dream, like something is going to happen and take our happiness away all over again. Ben has vivid dreams that we lose rainbow as well. I have panics and days where I just can not shake that feeling that something is going to happen. This has got worse the nearer we get to Nico's anniversary.

Everytime something happened, even if it was simple Ben getting a few pains we got this feeling which is hard to explain. Unless you have been in this situation it is hard to grasp. Where as if you sadly have, I am sure your will know, that feeling that just sinks in your stomach. It is like your going to either cry, scream or just faint, as someone is ripping your insides out. There is this real physical pain in your heart/chest. Then even when professionals reassures you, when we hear our baby's heartbeat or see them on a scan. While there is a wave of relief, this feeling deep down waiting for this bad thing to happen is all to real. Hoping with every fibre that it does not.

If you have lost a baby or anyone close to you has know you are not alone, there is many different ways to grief but know that there is support professional or people in the same position to help you. It helped us a lot by joining Facebook support pages where we could talk to people who have gone though a loss. They understood giving us advice, reassurance or just listened. Seeking professional help like counselling can help too, however normally there is a long waiting lists and it is very standard therapy that does not work for everyone. We had to wait 6 months before being able to get specialist bereavement counselling from a midwives and although we did seek other bereavement counselling it was not specialised in loss due to stillborn or miscarriage. We did not follow it thought. It is because it was more standard grieving for losing someone in your life rather then a baby that we had planned for and wanted so much.

There is a very different grieving process with various feelings in general when losing a baby. This grief is not any more or less then what someone may feel when losing another loved one, it is just different in ways I do not think I can really explain. Just the what if questions, why did this happened? Was it something we did? Could we have prevented it, if we pushed more? All the plans that we made together just ripped away. Then there are all the first, today for instance it has been a year. He should be one and celebrating his birthday here, not in heaven. Then the more hard days to come like when he would have first gone to school, gone to secondary, collage, uni even, got married had his own family. All those hopes and wishes that no longer existed, is one of the hardest things to process. Thinking everyday about what he would have looked like, what eye or hair colour he had, would he have Ben's green eyes and smile. What would his first word be or if he would take after us.

I know that there will be many hard days ahead but we want to cherish his memory, We will never let him be forgotten. We will tell our rainbow baby all about rainbows big brother who has given us the best gift; a chance to be daddies once more. Nico will be there to watch over and guide us all. He will forever be in our thoughts and hearts.

Today we are celebrating his first birthday by going though his photo book and all his things in his box, spending time looking over his things and thinking of him. Remembering him with a candle light and balloon release, please we ask you to join us at 8 pm, light a candle and say a few words to our boy. Post them, share his name Nico Joyce Lewis-Evans. Tag us #twotransdads

Happy 1st birthday our angel son I hope you know we love and miss you loads.