Even though I didn't like it, I understood his point. Getting pregnant is not such an easy task. It's not that I have a hard time getting pregnant. That has never been the case. What is the case for me is the stress that is endured once you know that you have a 1 in 4 chance of having a child with SMA. Why stress you ask as many people will tell you the odds are in your favor. That phrase is sometimes hard to swallow when you have already been touched by this disease and the wrath is takes upon your child. For me, it makes the thought of getting pregnant nervewracking to say the least.
When Dylan was diagnosed with SMA, Ron and I sat on our bed and cried for hours. Ron asked me if his son was going to die and I said I didn't know. I felt helpless. I also felt I was determined to give Dylan a full life and that I wanted to have more children. Ron and I then began to look at our options. We met with several genetic doctors and had some bloodwork done. This bloodwork confirmed that Ron and I were both SMA Carriers. We were told that since we were both carriers each pregnancy would have the following statistics regarding SMA:
1 in 4 chance that the baby would not have SMA and not be a carrier.
2 in 4 chance that the baby would not have SMA and would be an SMA carrier.
1 in 4 chance that the baby would have SMA.
The odds are in your favor (don't like that term at all) said the Genetic Dr. You should just take your chances and concieve that natural way and if the baby has SMA you can terminate it and try again. Wow. I thought this woman was way too clinical. Like that is such an easy decision for any parent to make. Like that decision wouldn't be life altering and upsetting. She made it seem like terminating a pregnancy was no big deal. I left her office feeling completely empty and a bit more helpless.
In 2005, Ron and I made the decision to try IVF. During IVF the embryos are tested for SMA with a process called PGD. Those embryos that do not have SMA are then implanted back into the Mom with the hopes that one will create a pregnancy. IVF was a long process for me. At the time, Dylan was very unstable and my Mother was back on chemotherapy. We almost lost Dylan several times during my IVF cycle. My IVF Cycle was unsuccessful and I remember on my follow up visit, the doctor said to me, Mrs. Cuevas you really should consider doing this the natural way after all the odds are in your favor. I absolutely lost it on this man. I told him it was easy for him to say that from behind his desk in his swanky Manhattan office making millions upon millions of dollars not knowing what my life has been like watching my child deteriorate day in and day out. I told him that even though I had a child with SMA that the odds were still in my favor because my son was absolutely amazing and that he had changed my life in ways I never knew possible. He agreed with me and then sat me down and had a nice talk with me where I finally saw a side of one of these doctors that was not clinical but was more compassionate.
A month later Dylan had a very bad episode and we made the decision to trach him. A month after that I was pregnant with Heather. I was so happy and nervous at the same time. During our IVF Cycle, we met with a doctor named Dr. Mark Hughes who is one of the pioneers of the PGD process. Dr. Hughes had told us that even if I did get pregnant from my IVF Cycle that I would have to have a CVS test to confirm that the baby did not have SMA since there was a small chance of wrong results from the PGD. He had told me he knew a brilliant doctor in Manhattan who he would recommend to perform this test. When I realized I was pregnant with Heather I wanted to know if she had SMA or not so I contacted Dr. Hughes to obtain this doctor's information. I then contacted this man, Dr. Mark Evans and set up an appointment to have the CVS test done. To say I was a bundle of nerves was an understatement. We first sat with a Genetic Counselor who was wonderful. She was really compassionate and just kind of understood what we were going through. She also never used the term...the odds are in your favor. Dr. Evans was a great man as well. I actually found him to be quite comical for a man of such intelligence and expertise. The test went smooth and we were told we would have the results in a few weeks. A few weeks later we found out that we were having a baby girl who would not have SMA and who was not a carrier. We were beyond excited. After Dr. Evans congratulated me he told me he would see me in 3 - 5 years when I was pregnant with number 3. Yeah right, I thought. This is it for me.
Nearly six years to the day of my CVS test with Heather I sat in Dr. Evan's office waiting for my CVS test for baby number 3. Yes, I am pregnant. When he walked in the room he told me he was off by a year and asked me if I would like to book an appointment for baby number 4 in 2017. I told him to bite his tongue. The test itself went smooth and we were now given the option to have our test results in 4-5 days rather than in weeks due to advancements that have taken place in Dr. Hughes' lab. We said absolutely. On April 3rd, 2012 we received the news that we were having a baby boy who does not have SMA and who is an SMA carrier. We all were over the moon and felt very blessed.
Dylan replied that we would need to get a bigger van. Heather asked me if the baby was Ron's and I told her no that George Clooney comes to visit me midnight on Thursdays so it may be his. Dylan likes the name Anthony. Heather likes the name Derek Jeter Cuevas. Both kids are really enjoying the thought of being a big brother and a big sister. A few days after we told them, Heather had the following conversation with me:
Mom, is this baby going to walk or is he going to be in a wheelchair?
Does it matter to you?
No Mom, but I just want to know because if he is in a wheelchair like Dylan I will have to help him like I help Dylan, but if he walks, then I will teach him all the right ways that he will help Dylan along with me.
I then told Heather that the doctors told me the baby does not have SMA and that God willing he should walk. She then replied. Good then I can teach him how to clean my room too.
We are all looking forward to this baby's arrival in October of 2012.
I guess I was on Santa's Good list this year as not only did I get the baby I wished for but I also got the diamond earrings too.
Here are the links for Dr. Hughes and Dr. Evans websites:
www.compregen.com
www.genesisgenetics.org
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| Me and my baby bump. |
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| Dyl and I at NYY opening day |
