“Incoming Call — Suretha -Vitalab”
The day had finally come where we got the news of our genetic testing. We approached the crossroads quicker than I expected. I starred at my screen for a while before I answered. I have suddenly developed a fear of answering my phone every time it rings. Suretha informed me that the results were in and that she wanted to meet with us to discuss the findings.
Between my limited time to get away from work and my husband’s busy schedule, we didn’t have an opportunity to meet with the Genetic Counseller and settled with getting the news over the phone.
“Hi Nicole, I’m sad that we couldn’t meet but here are your results. The results unfortunately came back negative”
Now many people were confused by our reaction when we told them that the genetic testing came back negative- meaning they couldn’t pick up the PH gene. In their eyes, it meant that we were all in the clear and that we can move forward with the surrogacy plan.
Not so much…
I remember telling my sister-in-law “S” about the results and all I could remember was her big beautiful eyes lighting up and a huge smile spreading across her face before I stopped it and said that it’s not such good news. Call me a kill-joy if you will but it wasn’t the news we wanted. You see, in my eyes, it meant that we had a much more difficult decision to make. We were definitely facing crossroads.
Do we go forward with the surrogacy plan and take the risk or don’t we?
Consulting with family and friends made a huge impact in our decision because in reality, it helped us process it. Two occasions really stuck out most for me through this whole ordeal that for me, made me more accepting of our decision.
We often meet up with our long time couple besties and I was eager to share the news with them. We told them that the results were negative and again, delight filled their faces. I remember the look of confusion when we didn’t share the same excitement. I played out the scenario for them.
Say we decide to go with the surrogacy and our child does in fact inherit Pulmonary Hypertension. A flood of fears wash over me just thinking about it.
Facts are facts…
At first, I would feel responsible because it is, in fact, my bad gene that I have passed down.
Secondly, the fear of finding suitable treatment for PH in South Africa is very disheartening. When I was diagnosed in 2006 I was given 3 months to live. Without treatment I would unlikely see the light of day. Treatment is South Africa for PH was unknown which made me jet off to the United States to find it. I count my lucky stars that I get to share my story with you today and this wonderful journey that I’m on.
Thirdly, to not only put my husband through the ordeal of dealing with a rare illness but to put my parents, my in-laws and the rest of my family through it all over again. It just doesn’t seem fair to us as new parents and to that beautiful child that didn’t ask to be sick. Silence filled the room after my closing argument and then they said, you never know what God’s plan will be.
Now, I understand that we cannot control what happens in life and illnesses that may lurk in the near future. Cancer seems to be invading homes that are too close for comfort these days. In our case, knowing and living through PH, It’s just something I don’t think I want to risk.
Does that make me selfishly cautious or aggressively stupid for thinking that this terrible PH disease MIGHT be inherited by my unborn child? That MIGHT has a pretty big percentage attached to it and it scares the life out of me.
The 2nd occasion was when we told M’s cousin Tals about the news. Now keep in mind that when M and I started dating, M had gone through the whole ordeal of my illness with me. So Tals, from the very beginning of our relationship said that she would be our surrogate for when the time came. From the very beginning she understood.
Recalling the night we told her, we were at a 21st and M had shared the news with her briefly. I was on the way to the ladies room when she caught up to me and hooked her arm in mine and said, “I heard the news, its ok”
Shaking uncontrollably there I was, telling that one person that had be cheering for us from the very start, that it just wasn’t in the cards for us. There we stood, in the bathroom crying in each other’s arms. Tals hugged me and said that her only wish for us was to experience the joy that children bring and that if we ever considered adopting that the crazy Coutinho family would love that child as if it were their own and welcome him/her with open arms.
How did we get so lucky to have a loving, selfless family like we do?
The road we took…
We hit a crossroad and we had to make a decision. We opted not to move forward with the surrogacy as the risk is just too great. I have no doubt that the road ahead will be hard.
There are things that I will always ask myself through this healing process. The wonder of what our baby would have looked like? Would I have been a good mother? Would my health get in the way of me taking care of a child?
For now, we will never know.
God’s plan for me has brought some really dark times and equally rewarding ones. I have faith that God is guiding us through this path and I know something bigger is waiting for us. It’s all about timing. Maybe we weren’t meant to be parents in this life and maybe that’s ok. Everything happens for a reason, I’m a big believer in that.
It is hard to come to terms that we will never hold the title of “Mama” & “Dada” but we have beautiful nieces and nephews who will enrich our lives and somewhat fill that hole. I for one, am determined to be the best Aunty/Godmother they could possibly have and that for me, is title enough.