Not only are we a same sex couple entering the world of fertility, but I am also affiliated with rare disesases.org May-Hegglin Anomaly. M-A-Y, like the month of May. H-E- Double G-LIN. I have lost count the number of times I have had to spell those words out while looking at the sheer disbelief on the consultants' face. Don't get me wrong; I have had plenty of time to learn the actual medical spelling and got the breakdown of the pronunciation down to a tee. I describe it as a low platelet condition where some platelets are larger than others, and it can cause large bruising. But in fact; it's an autosomal dominant disorder characterized by various degrees of thrombocytopenia, that may be associated with purpura and bleeding.

I was originally misdiagnosed at a clinic in Ohio; following a soccer injury during my time playing college soccer in the States. They diagnosed me with a different medical condition known as (ITP) Immune Thrombocytopenia. During this period, I was put on a strong steroid that made me put on weight and swell.

The Referral Process

Off we go to enter the unknown, emotional, roller coaster of ‘the fertility world’ I was thirty and my then twenty-eight-year-old fiancée, Michelle, now wife. We had always agreed on starting a family when we hit the thirties! At first, we went to our local GP practice to ask for a referral into the local private fertility clinic - which is the process you mostly follow in England. You seem to need a referral for everything - even to enter a private clinic! I can remember feeling excited to have the initial conversation with the local general practitioner in my hometown of Hartlepool, England.

We explained quite clearly that we would like to start a family and required a referral to the local private fertility clinic. The GP looked a little overwhelmed with what we were asking, and to be fair was quite honest in her response.

" Hmmm... well I have never actually referred a same-sex couple into the fertility center before, and I'm not so sure of the process. This left us a little stunned. Why would we require a separate referral process?

Because we were a same sex couple? Why had we been set apart from that of heterosexual couples, and require a different referral process because we fall under a different sexual orientation category? The referral process was no different from that of anyone else. Although, how it was communicated to us made us feel slightly more skeptical than excited. None the less, we remained positive and looked forward to the first private consultant appointment.

The Consultant Appointment

The handshake on welcoming us into the office is something I’ll never forget. It was like we were entering into a business agreement with the consultant rather than a family orientated clinic. On leaving the office my wife stated. "Is she on a power trip! I do not want to use this clinic Donna".

"Look, Michelle, let's just ride it out and attend the three mandatory counseling sessions and explore what we are feeling in those sessions, and maybe we can then make a decision".

We both came out of the appointment that day quite flustered and agreed we did not want to make any rash decisions based on the short-term negative emotions. It was quite apparent that the consultant did not know anything about the rare disorder of mine, and rather than owning it, she had just decided that I should not be the one to carry our child stating that my body was not capable of ‘such a thing’. “You could bleed out, and there is 50/50% chance the unborn child could genetically contract your disorder.” Not only would I be risking my life; I could be risking our unborn baby's life, not what you want to have hanging on your shoulders!

The Switching of Clinics

Maybe fate was on our side, but the local clinic had to close its doors due to funding difficulties, and we had to transfer to a new clinic. Although the new clinic had a waiting list, and other transferring patients, we felt a huge sense of relief that we would have a fresh start, get a clearer medical overview, and maybe explore other options for Michelle to prepare herself for pregnancy.

We utilized the waiting period to conduct the mandatory counseling sessions that we needed to complete and spent the sessions in endless amounts of tears. Both feeling so overwhelmed and slightly traumatized at the prospect of potentially losing my life and risking the life of our unborn child. I remember Michelle being so upset, that she had questioned continuing with the process out of fear at the slightest risk of losing me. What I didn’t understand was, how was the consultant, in her "professional opinion", telling me these things without consulting a specialist hematologist to explore the medical condition I have properly?

Forever Waiting

Months passed and we were still on the waiting list. During these months we were able to plan our wedding and were looking forward to our big day on 16th December 2017. We used the wedding as a positive distraction and continued to remain optimistic.

We also used the time to do our own research and speak with the leading experts (who diagnosed me with this condition). They provided us with a clearer overview of what pregnancy might look like with my condition. It was not all doom and gloom like we had previously been told! They did not have any known cases of people with a similar disorder that caused life-threatening issues of bleeding or extreme complications within labor.

But like any medical practice, they couldn’t give us a guarantee. Still. It was the relief we had been hoping for! Not only did we get some clear reassurance, but the hematologists were also willing to support us every step of the way by linking up with the new fertility consultant to support them through the process.

The new clinic

Wow! what a different experience altogether. No power trip handshakes, welcoming staff, and yet here I am again spelling the condition out like the ABC’s! Anyway, we had a wonderful, down-to-earth consultant, who was quite open in stating he had never heard of the condition but was willing to learn more about it.

Agree to Disagree Between Consultants

The new consultant was keen to speak with the specialist hematology consultant and discussed that I required a platelet transfusion upon egg retrieval as he would be "stabbing ovaries, which could bleed out". But the specialist hematology consultant suggested I did not require a platelet transfusion before egg collection and recommended a platelet count to be taken after egg retrieval and decide from there. They both agreed on me having tranexamic acid to help with any bleeding that was caused.

There was a lot of debating, too-ing and froing. I was having to fight my corner every step of the way- trying to convince them that I was robust enough and had not experienced prolific bleeding. I had played elite division one soccer and only experienced large bruising. The debates went on so long that our treatment plan was delayed.

We have had enough!

To be honest, by this point we were emotionally worn out! My hormones were all over the place from taking metformin three times a day to help with (PCOS) Polycystic Ovarian Syndrome. And by this point, we felt so deflated that two professional consultants could not agree on something in time for the planned treatment date in 2017.

The treatment plan we had emotionally prepared for and counted down the days to was canceled. The happiness and excitement vanished, and the hormones took over.

That's it! I spent the full week on the phone with both consultants. I wrote a detailed email to the fertility consultant to state my frustrations. How was it that two professional consultants, debating over a platelet transfusion before or after treatment can go on for that long? It was beyond a medical debate by this point, like ego’s bouncing off one another! At the time, it felt like the walls were just closing in around us.

The Ongoing Journey

The journey continued with more curveballs.

I always wonder how different our experience would have been if we initially had all the medical information at hand; if experts communicated clearly, and a clear treatment plan in place. Rather than making suggestions or assumptions.

How different might it had been if I had invested in something such as FertilityAnswers? And had all the medical experts look into my condition? I just wonder!