Just for new heart mums and dads

Hello Everyone, Béibhinn’s mummy here. I was cleaning out my emails and found this piece that I wrote a long time ago. I cried tonight as I read these words that I wrote back in October 2010. I wanted to share this on Béibhinn’s blog as I never actually got to start my own blog. I don’t even remember writing this. There were such dark days back then when I didn’t know what was going to happen. Béibhinn is writing this blog for all the new heart mummy’s and daddy’s who are entering this world today, tomorrow, next year or many years from now. This blog is to bring hope to all of you. I know that everyday new heart mums and dads are hearing the words ” I am sorry your baby’s heart does not look normal” many of them, like us are told that their baby will die at birth, we planned a funeral. Some are given a very small percentage chance that their baby will be “compatible with life ” these are the cold words that you are given. We were given this chance during our second opinion. We travelled to Belfast for this second opinion and we clung to this percentage. Others are given the option of abortion.

For all of you who are entering this world please read over Béibhinn’s story. This little girl came bursting into our lives against all odds. Heart Baby’s tend to be premature and have low birth weights, we were told she would be blue, weak and would probably need an operation straight away. Béibhinn was a day over her due date, she had to be dragged out by C Section, she was 10 pounds and cried on her own. Thankfully there was no need for the very large team and resuscitation machine that was waiting for her. She escaped her first operation. She is now nearly seven months and is still escaping. She will of course have her operation in the very near future. However thats not today or tomorrow please god so we will live for them.

After she was born Jenny one of the doctors who helped us during our time in Holles street maternity hospital came to visit me. She told me that Béibhinn was a miracle. She is our Miracle. I hope from reading this blog you will realise that what your told during your pregnancy is usually the worst case scenario. They have to tell you this. This is not the end of the world for you. I know you think you’r life will be hospital visits, operations and dealing with a very sick child. I firmly believed that was the way it was going to be. I didn’t care what I had to do as long as I had Béibhinn. Please remember it’s not.

This blog is different to all the heart mums blogs. I spent endless hours reading them during my pregnancy. They are amazing blogs with so much useful information. Us Heart mums and dads need to learn the workings of a very complex organ very quickly. These blogs are great for that. This blog is to show you another side of CHD. It’s to show you how wonderful and amazing your life will be with your little Miracle.

Yes there is worry, hospital visits and fear but they are nothing in return for the love, strength and happiness Béibhinn has brought to us in a few short months. Matt Hammitt’s song says it all ” all of me” please look it up and listen very carefully to the words of this song. This is a true heart parents journey. This blog is written by a true heart warrior. My beautiful baby girl. This is Béibhinn’s blog.

Béibhinn when your old enough mummy and daddy are going to print this blog into a book for you. One day I hope your sitting some where beautiful, I hope all your dreams are coming true because you deserve them and most importantly I hope your happy. I want you to know how much you were wanted and how much your mummy and daddy love you.

So after a very long post I didn’t mean to write here is what I found in my e mails tonight

The day we found out about Béibhinn’s Heart

On the 17th of September 2010 our lives changed forever when we heard the words ” I am sorry your baby’s heart does not look normal” I was 22 weeks pregnant with a little baby girl that we had wished and hoped for many years. When you find out that there is something wrong with your baby’s heart its not one heart that’s broken. That day it was three. Today I have decided to start a blog for Béibhinn so that she will know how much she is loved by her mummy and daddy and please god one day she can read over this and know the incrediable journey that we are all about to start.

Today I am 27 weeks pregnant + 3 days. So far we have been to Belfast twice to visit Dr Fank Casey. Dr Casey explained that Béibhinn has Left Atrial Isomerism Heterotaxy – Single Ventricle, Common Atrium, Common Ventricle Valve, Stomach and on the right. That is what we have found out so far. He told us that we could never fix Béibhinn’s heart but that we could do a three staged open heart operations called the Fontan that would enable us to manage her heart. As this operation has only been around since the 80’s they are not sure of the final outcome.

Eventually we are looking at a heart transplant. However this can only be done if Béibhinn has a spleen. Many babies born with Heterotaxy do not have spleens or else have many small spleen’s polysplenia. So right now I am praying really hard that she does have a spleen.

We have set up appointments with Crumlin childrens hosptial with Dr Colin Mac Mahon and arranged for Béibhinn to be born in Holles street in Dublin. We are renting an apartment In the Sheldon Hotel which is really close to Crumlin as we need to be up there 5 weeks before my due date which is the 19th of Jan 2011. Also they believe that we will be up there for up to 6 – 8 weeks if not longer once Béibhinn is born. This of course depends on how she is doing.

At the moment my emotions are crazy. I have spent alot of time on the internet researching Béibhinn’s CHD and have been so lucky to speak to three mum’s in Ireland who have already gone through this experience. Two of the mum’s have little girls with Heterotaxy which is very similar to Béibhinn. These little girls are now 16 months old and 2 years old so this gives me great hope. There are also 2 little boys in Ireland who also have Heterotaxy and thank god they are also doing very well. Heterotaxy affects 4 in every Million babies so it is extremely rare.

Hoping and praying for Béibhinn hopes journey.

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