When I was born, I had a VSD (Ventricular Septal Defect…. basically a hole in my heart). At 5 months old, I had open heart surgery and that was fixed. I was always told that I would like a perfectly normal life, but just to always be aware!
Just before I turned 21, I was admitted to hospital with palpitations.
I have forever had scans and checks up on my heart so was surprised during my stay when the Doctor said, “Has anyone ever told you that you have a bicuspid aortic valve?”
Errr…. no?
So then began lots of different hearts investigations including two full MRI scans. And still I have always been told I will live a normal life.
Today, 03.06.20, a week after being disappointed by being told it wouldn’t be this month (June), my cycle started again and following instructions, I contacted my clinic.
While I was at school, I was emailed by the clinic to explain that they needed to have an anaesthetist look over my files to see if I will need anything extra for egg collection (minor surgery under heavy sedation) and if I will need to have an anaesthetist present due to my heart conditions.
If this is the case, the email said treatment will likely be more like August time with egg collection sometime in September.
So another delay. I was gutted.
This, I knew, would take some time to settle in again that we are having to wait even more time.
“But it’s only an extra couple of months…” I am sure are some of your thoughts.
Yes, I guess technically you are right. But an extra couple of months for those of us battling infertility is a long time. It is more time of trying to make sure our bodies are IVF/conception ready; it is more time of trying to time everything perfectly just in case this is the month we will conceive naturally; it is more time of those depressive thoughts that remind you that of course it won’t be this month because you are not entitled to getting pregnant naturally; it is more time of hearing other people’s good news of how they are pregnant and how easy it was for them; it is more time of seeing perfectly formed pregnancy bumps in real-life and on social media; it is more time of seeing parents beaming with joy holding their new born or their cute family photos as their children grow older; it is more time of questioning if it will ever be you and if you will ever be blessed enough to experience making a real, living, breathing child that has come from your own flesh and is made up of the DNA of you and the one you love; it is more time of questioning what you ever did wrong to deserve this “cross to bear”; it is more time of managing excruciating periods knowing that this is because you didn’t conceive again this month; it is more time of your body reminding you that right now, it cannot do what it was naturally made for; it is more time of questioning whether you have indeed been forgotten.
It is fear, it is unknown, it is full of questions and it is depressive. More time has the ability to rob you of any joy and makes you want to give up, questioning if it will even be worth it.
So when you hear that treatment will be delayed, it is just a ‘meh’ feeling, but all of these things that you know will have to carry on for more time come rushing to the forefront of your mind.
And it hurts.
So anyway, I’ll carry on my story of 03.06.2020. This evening I was lay on the sofa, trying to get my head around what was going on and then my phone rang. A lovely consultant from our clinic was on the other end.
She asked me go through my medical history and to discuss what I knew about my heart. She asked, “Has anyone ever actually sat down with you and discussed with you the risks that pregnancy puts on your heart?”
“Hmmm, no, because I have always been told that I will live a perfectly normal life,” I replied.
“Unfortunately we will be unable to move forward with fertility treatment until someone has had a frank conversation with you about the risks that you will be putting on your heart if you get pregnant. At the moment, we don’t even know if you are safe to even be pregnant…”
Let me repeat what she just said to you, “AT THE MOMENT, WE DON’T EVEN KNOW IF YOU ARE SAFE TO EVEN BE PREGNANT…”
There are no words for me to explain what went on in my head at this moment. Hearing someone tell you that you may not actually be allowed to get pregnant when you have tried and tried for so long, when you are just at the point where you are about to begin IVF, is soul-crushing. It is like my already physically broken heart was just torn at a little bit more. My world shattered.
She continues to say that she needs to find a cardiologist who can speak with me and with the clinic to highlight any risks so that my husband and I can make an ‘informed decision’ about whether or not we would like to pursue fertility treatment. Like, hello?! Of course we want to continue fertility treatment.
The lovely lady (she genuinely was lovely, that isn’t sarcasm, despite the news she was bringing me) carried on to say that she would organise it but that this will take time because right now, during Covid-19 season, all NHS staff are busy working on all things Covid-19 and our situation is deemed not urgent.
At this point, I burst into tears. I could barely catch a breathe let alone speak to her. Perfectly timed, my husband walked into the room and she asked if there was someone at home with me who she could speak to. And she spoke calmly and gently to my husband to explain the situation as well. She allowed him to ask questions that I couldn’t think of let alone articulate in my despair. She really was very calm and understanding, but sadly, she has to know the facts before she risks my life.
So here we are, broken, and not even knowing if I will be allowed to carry a baby. There are no words. My heart, my chest, my eyes hurt. Everything hurts. And I just want to go away.
EDIT: So since writing this yesterday, I have had another call from the clinic. A different lady, but this time a nurse and even more lovely. She asked if I still wanted to go to the clinic next week for my AMH blood test. Yes! Absolutely.
She let me ask questions and explained more about the situation.
She suggested that my husband and I try and find a cardiologist as well, so that whoever gets to speak to one sooner gets the job done! But she also said that NHS cardiologists probably won’t be available until at least August at the earliest due to Covid.
With regards to the anaesthetist, she said the reason why it will be delayed for this is because it could be that I will need extra care during sedation and if anything goes wrong, an anaesthetist will need to step in. But the problem is, due to Covid-19, they will need a special type of PPE, not the usual type worn by medical professionals. Fair enough! Except that said PPE is being delayed in delivery. It was ordered in April and now may not get delivered until October or November….
Great! So my IVF treatment could be getting delayed because of PPE!? Never, ever, even at the start of lock down, could I have imagined that my IVF treatment will be delayed because of PPE. And not just delay by weeks, but delayed even more until October/November.
What is going on? How has the most natural and simple life process become such hard work for Pete and I? I am in disbelief.
So where does this leave us?
It leaves us praying that PPE will be delivered sooner if I need it.
It leaves us out of pocket because we have decided to go private to find a cardiologist who we can speak to sooner. Hopefully to tell us that everything will be ok, and hopefully not to tell us that I should never get pregnant and that we should pull out of having fertility treatment…
Journeying to Family 