You will be reading this as Monika and I are about to embark on the next chapter of our life together. I’ll be thinking about this blog post and also the week ahead. I’ll also be thinking about your reactions and thoughts towards the contents of this post and hoping you can share the sentiment. I realise that I have not written many words for a while. I’ve been focusing on the next chapter in my life – family. You may recall that I proposed to Monika and she accepted. I’m pleased to tell you that we got married on July 5th 2014.
The usual stages of a solid relationship is live together for a bit, make sure you are comfortable with each other, make sure the spark is always present and prepare for a long lasting future together. That usually involves marriage, getting a house and starting a family – there is no order that you do this in and there is not a set way to approach this.
Having a family is something that I have always dreamed of. It’s a cruel world when you are denied the opportunity to start it the easy way with someone you love. Over the past year Monika and I have been investigating what our options are. As you may or may not know I am infertile due to Klinefelters Syndrome. I was born with an extra X chromosome. A simple way of explaining why I’m infertile is that some things are switched on and other things are switched off. The ability to father a child by normal means is switched off as is the ability to produce normal levels of Testosterone – something that I receive treatment for.
The first option we explored was the process to surgically retrieve sperm from the testes. However upon finding out that after taking testosterone supplements reduces the chances of finding sperm we decided this was not an option. We were given a chance of 20% at a cost of about £5,000 + storage costs. Financial implications aside – and considering everything I’ve been through till this point – it would destroy me, knowing that there is nothing to rescue. It was not an easy decision to come to and I suffered many sleepless nights thinking about the process and the implications of it.
The second and final option we considered was to go down the route of donor sperm. You would think it’s a a relatively straightforward process getting donor sperm. Trust me, it’s not at all. Once we had made the decision that this is what we wanted to do. Monika contacted her G.P. and told him of our complications to start a family – he wrote a referral letter. About 4-weeks later Monika received an appointment to attend St. Barts (London) fertility clinic.
When we attended the clinic, we were greeted by a really pleasant (sarcasm) receptionist. Who instructed us both to fill out consent forms – basically protecting all parties involved. I initially thought this was weird as we had just come through the door, walking into the unknown – a cold sterile environment with a moody receptionist and your typical NHS drinks machine buzzing away in the background. We filled in the forms and waited about 20 minutes before a nurse came and took Monika off to get measured and weighed. Another 20 minutes passed and we were ushered into a room by a doctor.
The room was at the end of the corridor, it felt like a box room and in the corner was a window and beneath that was a chair with ultrasound equipment – the room was cold and it wasn’t just our nerves. The whole place had that negative vibe about it. The doctor was clearly new and not familiar with her surroundings. Fumbling around on the desk gathering scraps of paper and leaflets. The doctor turned and started to speak to Monika and say that her G.P had referred here to the clinic on the grounds of not being able to start a family by natural means.
The doctor asked if she knew why we had been referred to that particular clinic. I piped up and said it is down to the fact that I’m infertile due to Klinefelters Syndrome. The doctor grunted (very odd) and mentioned that there was no mention of that on the referral letter. I thought in the back of my mind ‘here we go again’. She began to question me about when I found out and under what circumstances. I felt a bit weird talking about it all and I was speaking with a lump in my throat – it’s not a time in my life I want to remember. Monika reached out and comforted me and then spoke to the doctor about the next steps as I was unable to articulate my thoughts. The doctor said that we would both have to have blood tests and I would have to give a sperm sample. Monika also had to book in for a scan to make sure she was okay inside. The doctor then said because she had no record of the Klinefelters Syndrome we would have to start again. I suddenly felt weird, starting again – as in verification of me having Klinefelters Syndrome? Surely they can just contact the consultant at Guildford and swap notes!
They asked me if I could get the notes as they did not have it available from the G.P, but then why would they as it was Monika that had been referred – patient confidentiality and all that jazz. The doctor was still insistent that I do a sperm test and a blood test. I questioned this – if we were going to go down the sperm donor route I would not be involved in the process physically. The doctor then started to go on about surgical sperm retrieval and said that there might still be a chance for us. I mentioned to her that we had considered it and it wasn’t something we wanted to go for. The doctor didn’t seem to take no for an answer and carried on insisting I have the tests. I felt really pissed off by her approach towards it all and I agreed to it just so she would stop talking. We received our slips for the blood and then we had to book an appointment for Monika’s scan. Leaving the place we felt excited but deep down I knew it wasn’t going to be an easy process and we would have to join the queue.
Monika had the blood tests done as soon as she could and the service was not the best. Several attempts and a bloody arm later it was a process that Monika did not want to repeat for a while. I wrote a letter to my consultant in Guildford explaining the situation and then followed up with his secretary over the phone. Apparently they had sent a letter to St. Barts with all my details and they advised me not to have the tests as all the information the doctor needed was there.
A month or two later Monika received an appointment to visit the hospital clinic and have an internal scan. I went along to support Monika. We met a lovely doctor who seemed very knowledgeable about our situation which put us both at ease. I don’t think the procedure was very pleasant for Monika – but it seemed to be over in about 20 minutes. I was going to make a joke about the way the doctor applied the condom to the probe but that would have been inappropriate so I refrained and told Monika afterwards. We both had a giggle. The doctor then explained the next steps and we were told we would get a follow up appointment to speak to the doctor about treatment options. Monika also asked the doctor if everything was okay – and the doctor put her mind at ease with no noticeable issues.
Two months had passed by and we had not heard anything from the doctor. Monika decided to follow up and then an appointment was issued. This time I wasn’t able to attend due to attending a business meeting. On arrival at the clinic Monika was met by her favourite receptionist and told to wait in the waiting room. There is just something about the receptionist that rubs Monika up the wrong way. Monika was ushered into the consulting room by a different doctor. In this clinic you never get to see the same doctor which I find odd as there is no consistency between appointments and you have to repeat all your details over and over. Had I have been at the next appointment I think I would have lost my shit as what follows is an appalling situation.
Apparently the doctor that we had seen the last time had left the clinic and between our appointments and Monika’s tests nothing had been done. That’s right, absolutely nothing! Monika had to spend the next 30 minutes or so explaining the situation to the new doctor. The doctor was adamant that I would need to have certain tests performed on me as they did not have the letter from the my consultant to back up what Monika had told them. Thinking about it my consultant probably referenced my name in his letter. All the consultations are in Monika’s name – so no doubt the letter is sitting in a filling tray addressed to the doctor that left.
Monika walked away from the appointment feeling a bit sad as it felt like we were a few months off from where we wanted to be in the process. Monika had to repeat her tests, thankfully they still had record of the internal scan. I had to make an appointment for my blood to be taken and also to give a sample of the nothing that comes out. As they wanted to check that my consultant had not missed anything – ridiculous and I refused to get these tests done. Going down the donor sperm route there’s no need in my mind to have these tests done.
Another month went by and we received a letter from St. Barts asking us to visit a counselor. The doctors apparently need to make sure that as a couple you really want to have a child and you are mentally prepared for the task ahead. We were told about the various options open to us – sperm retrieval being something that was still talked about even though we had made our minds up on donor sperm. The counselor then carried on to talk about when to tell the child that they were made from an anonymous sperm donor – although it’s not completely anonymous as your child at the age of 18 is legally entitled to contact the donor. Something I was aware of, but also something that we had not thought about too much. When you are sat in a room with your wife to be – this stuff really hits you both emotionally hard as it wasn’t something we had considered.
The counselor then began to tell us about books you can get to explain to the child from an early age where they came from. Apparently some parents to be – don’t tell the child due to religious beliefs. We discussed at length with the counselor that we would aim to talk to the child as soon as they were able to understand the situation.
We then discussed all of the different treatment options available to us. For example they can put Monika on certain medication that will force the cycle. We needed to be made aware of the complications of this medication and also the impact it would have on our lives. The session lasted for just over an hour and I could not help thinking that we were on trial – and we needed her sign off before we were allowed to progress to the next stage.
The next stage was an appointment with the nursing team however it was a right mess trying to organise an appointment. We were copied into an email from the counselor to the fertility nurses that we were ready to progress. The counselor put in her email that we should be able to just get on and do it. After lots of emails to an unresponsive nursing team we finally made contact and two months later an appointment came through the door. This time it wasn’t with the nurse but with another consultant who has the overall decision if you can progress with the assisted pregnancy and also what treatment you get.
We found ourselves having to explain about the Klinefelters Syndrome and how we got to where we are. It all seems like it’s taken a year to finally start seeing some action from St. Barts. During that appointment we told the consultant about the previous appointments and about the tests the other doctor wanted me to have. We spoke about the % chances and how we got to our decision on using donor sperm. The consultant then decided he was not going to put Monika on any medication and to attempt a natural insemination process. The consultant also said that I did not need to do the tests (I was relieved!) however Monika would need to do a few more blood ones to make sure her hormones are doing what they should be.
Then we spoke about costs and this is what we get upset about the most as it’s not cheap. For example if we went hunting for sperm, that operation would be approximately £5k plus storage fees if something was found. On top of that, would be the cost of cycles of ICSI. On the NHS we are covered up to 2 cycles including drugs and follow-up appointments. After that we are on our own! We were relieved to hear that for the natural process we just have to pay for the sperm and then wait for the magic to happen. Although we are less likely to have twins. I guess if Monika enjoys the pregnancy we can make sure we buy enough sperm for a second child from the same donor.
Having just got married at this stage we were getting excited as the consultant had signed off the treatment and stated we could start as soon as Monika’s next period. After we left it started to feel awesome that we were ready to start the next chapter. The consultant suggested we go over to the main clinic to make an appointment with the nurses to kick off the process. We walked over to the clinic and we were greeted by non other than the moody receptionist. We explained what the consultant had said and for us to make the next available appointment. We were in August and she said the next appointment would be end of October! Both of our hearts sunk to the ground. More waiting around! Monika started to cry and I got upset as well. The receptionist was very unsympathetic towards us which made us feel really great! We made the appointment for October and stormed out of the clinic – gutted!
As we walked out we exchanged frustrations with the whole process – it’s been a chore to get to where we are today and it felt like we were being made to wait even longer. We had even done calculations that if we started in September we could have a summer baby. We have even chosen names as we’ve had such a long time to think about it all. I’ll keep that under wraps for now.
I was inspired to write this post as we received a letter recently that our appointment to start had been brought forward to September. As you can imagine we are really excited again. I’m writing this post through crazy turbulence on a flight back from a business trip. It feels good to be able to share with you our plans for the future and also highlight the process we have had to go through to start a family. A part of me wishes we were able to have a family through normal means but then when I think about it, we are going to make ace parents! This process has made us stronger, closer and more appreciative of the building blocks of life. As you are reading this post we are probably in the clinic discussing the treatment with the nurses and choosing our donor. Watch this space, baby Sheridan is coming to a world near you soon!