Me, Myself and MRKH

Prue Craven

Here is much a timeline of my experience surrounding MRKH and all infertility treatments that I have endured over the past almost 20 years. I have done this out of self believe, never ending hope and determination, and motivation to make my dreams a reality and inspire others to survive and have a voice to speak up. 

 Feb 8th 2002, Diagnosed with MRKH at the Royal Children’s Hospital

-suffered with depression and self harm as a result of this

-simultaneously had 2 major stomach surgeries for severe gastric reflux disease at RCH

– was in final years of high school at this time and had special consideration for exams as in hospital most of this time

– I was told by doctors that the only way I’d ever be able to have a child was either to use a surrogate or adopt. 

• Nov 3rd 2005, Began dating Tom Craven.

– We had known one another since playgroup days, also went to the same high school

– Tom was studying Double degree of Bachelor of Construction Management and Masters of Architecture. He has since been working as a Design Manager

– I was studying Bachelor of Nursing, and have since been practicing as a Paediatric Nurse, mostly at the Royal Children’s Hospital in Melbourne.

• March 31st 2012, Tom and I married.

-We’ve been together over 17 years, and married for nearly 12 years❤️

 Nov 2012 we began our IVF journey with Melbourne IVF.

– From Nov 12’ – August 14’  I underwent 5 rounds of IVF cycles

– 2 IVF rounds resulted in me ending up in hospital for multiple days needing intravenous antibiotics for ovarian hyperstimulation syndrome.

•Dec 2012, Began our journey with All IVF Centre in Bangkok, Thailand. This journey spanned over approx 18 months.

– we had an Australian correspondent who assisted us with shipping embryos over to Thailand, over 8 embryos in total were shipped over. 

– the clinical used paid surrogates

– We tried with 3 surrogates, had over 6 embryo transfers, fell pregnant twice and miscarried. 

– days after our last failed embryo transfer with our last 3 embryos, the military shut down commercial surrogacy in Thailand and we were unable to contact Dr Pisit from All IVF after this time (see attached article)

– This process cost us over $60,000 AUD.

•April 2013 Tom and I enquired about adoption in the hope this might be easier than IVF and surrogacy. 

– we attended one single adoption meeting, but essentially it was hopeless. They wouldn’t permit couples having embryos in storage adopt. We had limited savings and were only renting. 

– we were also told the average wait time for a child under 5 would be approx 7-10 years

 Nov 2014, I did my 6th IVF cycle 

-we had no embryos left from Thailand. By this stage I was completely traumatised.

– we managed to get 3 embryos which are still in frozen storage with MIVF to this day.

• Jun 2015, Tom and I moved to London to work and live for 2 years

-whilst living in London we went to an adoption meeting, essentially we were told that if we wanted to adopt we would have to permanently move in London. We couldn’t bring ourselves to do this given we had no family support in the UK. 

• Aug 2017 we returned from london to resume trying to have a family 

– during this time we hoped someone might offer to be a surrogate

• Jun 2019 we began investigating surrogacy in Ukraine, planning a trip over in mid 2020.

– we did not tell our families about this plan in fear of judgement

 Oct 2019 I saw an advertisement for the Uterus Transplant Trial though RPA

– I made an enquiry the next day in regards to the screening to be a candidate

– a few weeks later I was on a flight to Sydney with my mum and husband and live donor (close family friend) to meet with the Trial Fertility Doctor. 

– Tom, my donor and I made multiple trips up to Sydney in November, January and February out of our own expensive for blood tests, medical imaging scans and consultations with doctors. 

• Mar 2020 the trial got put on indefinite hold due to COVID-19 Pandemic

– Tom and I had already booked a week long trip up to Sydney to meet the transplant team members, these appointments got cancelled 2 days before we were due to leave. We couldn’t get a refund on our flights, so went to Sydney anyway. 

• June 2020, after Melbourne’s first covid lockdown, Tom and I permanently relocated to Sydney 

– we hoped that the trial would recommence soon and wanted to be ready and closer to the hospital 

– we never imagine that the Covid pandemic would go on for as long as it did, we felt isolated in Sydney, after not being able to return to Melbourne to see family or friends with ongoing border closures and lockdowns 

Feb 2021 to April 21’ I underwent my 7th and final IVF cycle through RPA

– it was long medicated cycle that spanned over a few months due to my age, being 35 years old was obviously going to be more difficult given I also have LOR (low ovarian reserve), a common occurrence in women with MRKH

– part of the transplant trial eligibility criteria was to have 5 PGD or genetically tested embryos, this was all RPA permitted us to do during the pandemic.

– Luckily, I got 7 eggs, and we ended up being able to freeze 5 genetically tested and viable embryos for use with Genea Fertility

• Jun 2021 Tom and I decided to relocate back to Melbourne due to hardship and the Uterus Transplant Trial still looking to be indefinitely on hold

– Due to lockdowns, we had to apply for an Emergency residential relocation permit. We waited over 2 weeks for this permit to come through before we could cross the border home into Victoria, it came through only 2 days before we would have been homeless.

 Jul 2021 we were finally able to relocate back to Melbourne

– we had to spend 2 weeks forced quarantine isolation in a Ballarat Airbnb before being able to see our family and friends. Both of us were fully vaccinated.

– we went from quarantine into 2.5 months of hard lockdown in Melbourne, thankfully we were both still able to work

– We remained in contact with the RPA Uterine Transplant Trial Coordinator in the following months

• Jan 2022 my very lovely friend offered to be a surrogate for Tom and I

– after consulting with RPA, we were assured that exploring surrogacy was allowed

– The prospect of going back to surrogacy in the Ukraine was also no longer a viable option due to the Russo-Ukrainian War that began

• Feb 2022 we commenced our surrogacy appointments, these spanned over many months with my friend and surrogate.

-This included lawyers, counsellor, psychologist, fertility doctor, obstetrician, blood test and cost over $10,000 AUD 

• April 2022, The Transplant team at RPA told us that we were told that we would not be able to undergo surrogacy treatment concurrently, and so we made the difficult decision to stop our surrogacy treatment

• May 2022 RPA contacted us to say the Uterus Transplant Trial was recommencing

– RPA planned to do their first surgery in November 

– again Tom, my donor and myself made trips up to Sydney for consults and scans

• Jul 2022,  after waiting for more information, RPA told us that they were pushing the timeline for transplant surgery out to early-mid 2023 due to covid reasons

-It was an incredibly difficult decision, and it broke our hearts walking away from the trial and our donor, but we decided to resume with our surrogacy journey. There were too many ongoing set backs and little progress, and we were so desperate to have a child. 

-So we made contact with our surrogate, who was all too happy to pickup where we left off. 

 In Sep 2022 we commenced our first cycle in preparation for embryo transfer

– Unfortunately the cycle was cancelled 2/3rd way through as we found out our surrogates uterine lining wasn’t suitable for embryo transfer, and this would hinder us progressing any further

– And so our surrogacy journey ended before it even got her chance to begin. We were heartbroken. 

Oct 2022, with our donor’s permission we rejoined the RPA uterus transplant trial screening program

– we again made trips up to Sydney for scans and meetings with the doctors

Dec 23rd 2022 we got the call we had been waiting for, for over 3 years

The surgery date was set for Feb 22nd 2023 and from Mid Jan it was all going to ramp up in final preparations

Jan 9th 2023 we gave noticed to end our lease and relocate our jobs and began planning our relocation back to Sydney 

– However on Jan 16th, after a multidisciplinary team meeting RPA decided that my donor was not fully suitable for surgery and needed more time to physically prepare, putting us on hold yet again with no indication when it would be our time. 

This broke mine and my donors hearts and spirits, again no end in sight.

– RPA allowed me to complete my recipient screening, and so Tom and I spent the last week of Jan in Sydney meeting all of the transplant team members and looking for rentals. It was too late to delay our plans to relocate. 

Feb 2nd 2023 I got a call from Dr Rebecca Deans about the Royal Hospital for Women’s Uterine Transplant Program

– this felt like the day my infertility journey finally took a turn in the right direction

– after taking some time to consider walking away from RPA yet again, Tom and I consulted with my donor, she was rightfully reluctant to have to re-screen for uterus transplantation. Again worried about the ongoing disruption to work and life. 

Feb 15th 2023 I had my first uterus transplant consult with Dr Deans

-following on from this I had consults, scans and blood tests and other various tests over the coming weeks

-my donor also flew up from Melbourne to Sydney to attend appointments and tests.

* Feb 20th surgery for uterus transplant is scheduled for 10th March 2023 for myself and my donor

     * Thursday 9th March, after 1,233 days of waiting and waiting it all finally begins! 

      - admission to the Royal Hospital for Women is at 10am, the day will involve a blurr of consults and tests, all the last minute       preparations for surgery.

  • Friday 10th March 2023, Uterus Transplant Surgery

– Donor surgery begins at 6:30am and is completed by 3:30pm

-Recipient surgery begins at 1:30pm and is completed by 9:30pm

-We wokeup in Acute Care, where we spent the first 3 days postop, before being transferred to Macquarie Ward for the remainder of our stay

-I was discharged home after 7 days in hospital, my donor came home after 9 days.

  • Today I am 23 days post uterus transplant surgery!

– My recovery is slow and steady, but going really well.

– I am now able to walk up to the local cafe to grab a coffee, and local supermarket for a few supplies

-I’ve been having twice weekly blood tests to monitor renal function and anti-rejection levels, including consults with the renal team

-I’m having weekly biopsies, 3 done so far, all good resultsAs of now I am waiting for my first ever menstrual period to come along! I expect to get this around the 4 week mark, I have been looking forward to this moment for the last 19 years! There will be celebrations when this time comes!!!

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