THE WILL TO KEEP GOING... by Carleen Carlson - SUMMER 2011

THE WILL TO KEEP GOING...

by Carleen Carlson

My name is Carleen Carlson, but sometimes I think it should be Carleen Murphy – as in Murphy’s Law. “If anything can go wrong, it will.” That pretty much sums up my infertility journey so far. How did I keep going? I guess I am stubborn. At least when it comes to having a family…

At the beginning of my struggle , I felt my problem was so intimate and personal that no one would understand. Granted, being told in your mid-twenties that you have premature ovarian failure and can never hope to have a biological child is not pleasant. But who would sympathize with a single woman of 26, with no man yet in her life and no plans to be pregnant anytime soon?

In good time I met my husband and we were married. Now it was time to start our family. Given my earlier diagnosis, his sperm was tested and he “passed”, so we spent six months trying to conceive on our own, without success. Then in 2006 we tried ovarian hyperstimulation, spending several thousand dollars on medications, but I only produced one egg of questionable quality. We were told that because I did not respond well to the hyperstimulation, we would not be candidates for IVF.

Of course we were sad, but we remained positive and proceeded with our next possibility: egg donation. It is illegal to pay an egg donor in Canada, so who could possibly donate their eggs to us? We had no family members or friends who met the criteria. Even if we had, were we going to be comfortable knowing who the biological mother of our child was? Would our relationship with her be strong enough to survive the challenges of parenting our child? How would our child react when he/she was old enough to understand? These concerns haunted us.

Our very supportive doctor referred us to a reputable US clinic. We knew this was the right choice for us - I would carry our child and my husband would be the biological father. Our first consultation in 2007 at the US clinic was an amazing experience. Everyone was very helpful. It felt like we were well on our way to becoming parents now.

Six months later the clinic let us know that they had a possible donor. We read her profile and my husband even noted how similar her personality was to mine! She would go through the ovarian hyperstimulation at the same time that I would go through preparations of my uterus.

We were ready to leave on our trip to the clinic when I received a call announcing that our egg donor had developed a cyst making it necessary to stop stimulation. The nurse apologized profusely and I could hear how upset she was. I tried to hold back the tears until I made it to the washroom at work. I pulled myself together long enough to get to my car to go home. I realized that I was emotionally and physically exhausted.My husband and I decided that when it was time to prepare for another transfer, I would reduce my work hours to focus on treatment.

Our egg donor was again ready in July 2008, and everything went smoothly this time. The IVF resulted in 11 embryos, all of which were good quality. We transferred two embryos on day 5 and I spent two days on bed rest before returning home. Five days following the transfer I had my first clue that I may be pregnant, and when we got the call from the clinic on day 10 it was confirmed. My HCG level was high enough that my doctor was 90% sure that both embryos implanted. What absolute joy we felt!! We knew that carrying twins meant higher risks, so I reduced my hours at work. We were going to do everything we possibly could do to be sure that our babies would be healthy!

About four months into the pregnancy I started to experience elevated blood pressure and some swelling, but it was not anything of concern. Then, the swelling got worse so I was admitted to antepartum for observation. I was diagnosed with pregnancy-induced hypertension and referred to an Internal Medicine specialist. I was put on blood pressure medication and released from the hospital. Despite doing everything I possibly could, my symptoms worsened and I was admitted to hospital at 24 weeks of gestation in December 2008. At that point I had developed HELLP syndrome* and it was not clear my pregnancy could reach a viable stage.

It was a day by day battle and my husband basically moved into the hospital with me.
Unfortunately, at 25 weeks and five days of gestation, the smaller baby showed symptoms of distress and we had to deliver. Our baby boys were born extremely premature, but made it through the delivery. The following day I was told that one baby would not live. He was just too small at 510 grams. The doctors and nurses rolled my hospital bed and monitors into the intensive care unit for me to see my baby for the first time, hold him in my arms and say good-bye. The most heart-wrenching moment in any parents’ life! While feeling so broken-hearted, I also felt pure and utter joy at meeting my second baby. He weighed 750 grams and he was a fighter! Although I was not able to hold him in my arms, I could hold his hand and feel immense joy and love in my heart.

Filled with so much emotion and the physical pain from the surgery, it was probably a blessing that I had little memory of the two days that followed. On the third day I was told I had suffered a stroke. What!!! How much more could I take?? What a way to bring in the New Year! I could barely stand on my own. My speech had been affected, my motor skills on my right side, and my memory. Still, I will never forget every moment that I was able to
hold my baby’s hand and talk to him. That is what gave me the strength to keep going, I knew that I still had a tiny baby who needed me and that I had to get better!

I went to see my son every chance I had. Then one morning, when my husband had left the room for me to rest, I had a visit from the NICU doctor who told me sadly that my baby had a brain hemorrhage and was not expected to survive. Life is not fair. Once my husband came back we asked for the doctor to come back to discuss this further, especially as I had had a

* HELLP syndrome is a life-threatening obstetric complication considered to be a variant of pre-eclampsia.
stroke and was not fully capable of communicating. We were given the option to perform surgery, but there was no guarantee that our baby would survive and if he did, he could be left with extreme challenges. I think if I was going to give up on life that would have been the time. We decided not to do the surgery and to spend as much time as we could with our baby before we would inevitably have to say good bye. We called our family to come and spend the remaining hours of his life with him. They moved us into a separate room just outside the NICU where we held our baby for the first and last time AGAIN!!! How much can a person endure in a matter of one week?

As the months passed, I managed to find comfort in the fact that I was getting better and that I had somewhat lived a dream I had dreamed of for so long - I experienced a pregnancy and I was able to hold my babies in my arms. My husband and I knew we did everything we could possibly do to bring our babies into this world, and our job as parents was to do what was best for them – in this case letting them go.

Although I healed physically and we healed emotionally, we will never be the same again; no one can be after losing a child. We try to live each day as if it is our last and we still look forward and dream of having a family.

We continued our journey to become parents. We found a gestational carrier and at the beginning of 2010, we met at our clinic in the US and had her work-up done. We were hopeful once again!!!

We were excited when our surrogate’s pregnancy was confirmed, but were cautioned that her level was low. Sure enough, two days later we got the call telling us that she was miscarrying. I do think that we handled it quite well. I mean, we survived the worst and we will survive it again! Our surrogate felt horrible and we reassured her that it was not her fault.

We couldn’t stop now. Hopefully the next try would work. We proceeded with another transfer and the report from the surrogate and the doctor was good. Two good quality embryos were transferred and everyone was feeling very positive that this was going to be successful. Unfortunately, two weeks later the surrogate’s pregnancy test was negative. We did not bounce back as quickly this time. It felt like we were really being tested…

Now we are faced with another decision that will affect the rest of our lives. Do we continue trying with the remaining embryos or do we adopt? What can we afford financially and emotionally?

Our lives have changed drastically. I don’t know if anyone who has faced infertility can ever be the same. You have to look deep inside your soul to discover who you really are, what you want in life and how much you can endure. Most of all, where will you get the strength and support to keep moving on? My biggest support is my husband – the amazing man who has been beside me holding my hand, comforting my heart and my soul, giving me the strength to keep going. How he does it – I don’t know! The support of our family and friends is also precious.

My message to you is to dig deep down and be true to yourself. Then find the support you need to make it through. If you don’t want to share your struggle with your family and friends yet, then contact the IAAC and hopefully you will find someone who truly understands. Whatever steps you take, be sure that you are comfortable with your decision. We can honestly say that we have no regrets - this provides us with a great deal of comfort and strength to move on.