I want to tell you a story about a beautiful little boy named Gabriel. He is strong, funny, handsome and a miracle. Gabriel has two loving parents and two adoring sisters. Before you read further you should know that Gabriel isn’t born yet but he has already made an impact on my life. (No I am not pregnant!)
Let me explain…
Some of you may already know, but if you don’t, I work in a high risk pregnancy clinic. We deal with anything from diabetes in pregnancy to pregnancies complicated with chromosomal abnormalities. There is the occasional patient that comes across my path that I bond with. I admit before all of this cancer business I pretty much did my job and left it at the clinic. I am chatty, sarcastic and love to joke around but rarely bond. But since going through what I am, I believe I can relate with these parents on some level. Therefore a bond is created.
Where am I going with this? Hang on it is coming!
Like I mentioned before there are times in my job that a couple will come in and they absolutely warm my heart. That is what Jocelyn and Chris did to me, warmed my heart and woke up my soul. When I first met them it was a blur really. They had a quick exam and spoke with someone who gave them the hardest news for new excited expecting parents. In fact it put them into a hurricane of emotions. Further testing occurred and the little boy Jocelyn is carrying has a chromosome abnormality called Trisomy 18 or Edward’s Syndrome. This chromosome disorder is caused by the presence of all or part of an extra chromosome. This chromosome abnormality occurs in one in 6,000 live births. There are a slew of problems that come with this type of chromosome abnormality and every baby that is affected is different. When I saw them again at their next appointment they came in my room terrified. Jocelyn was in tears and almost had an uncontrollable shake. The look in her eyes was telling me to give them some hope. I have had this look before when nothing makes sense from my doctors. The jest of the appointment was to evaluate the baby by ultrasound and assess the well-being. I knew I didn’t have to but I couldn’t help but try to put their terrified minds at ease.
With Trisomy 18 there can be many physical abnormalities and assured mental disabilities. Sure enough Gabriel has some life threatening abnormalities and the risks do get greater as the pregnancy progresses but I felt like I needed to give this couple something positive to hold onto. I performed a 3D ultrasound and showed them the perfect face of their baby boy. I took the time to show them every part of him so they could not only understand all the big words doctors were throwing around but mostly so they can form a bond with this little boy they have been too terrified to enjoy. To show them he isn’t a statistic and that he is human…real…just like the rest of us.
Most doctors will tell you that this type of chromosomal abnormality isn’t “compatible with life.” Rarely will they give encouraging words. Same in my case. I am told the statistical probability of me living longer than 14 months is low, or the odds of this round of chemotherapy shrinking some tumors is less them 10% and all I can think of is, “how can you possibly know this?” How do the doctors know when so many times before they weren’t right? Every doctors appointment is filled with them trying to get me to prepare to die. I DON’T WANT TO! Who are they to tell me when my time is up? No cancer patient is the same as the next. We are all different and our bodies will all react in different ways. So why should I just be okay with the doctor using probability and previous cases as the script for the rest of this life I have? Doctors are human too and they do make mistakes, this I get. But should we always take the word of our doctors? When we are faced with great obstacles our intuition kicks in, we forget to trust that feeling. The reality is, these doctors don’t know. It’s a guessing game and hope for the best. I always took their word as the end all, be all. But let me tell you that I have come to believe…doctors are just really educated guessers.
The fact is we could flip a coin and mathematically do better than some doctors. If you believe your doctors are incorrect in their assessment of your health, speak up and speak up vociferously. It is your body. It is your life. Meeting Jocelyn and Chris restored this fire back in me. They have restored my faith and started the mending of my soul. It also gave me a sense that I was doing something positive.
Yes, reality is most of these doctors treating Jocelyn will tell the suggested age expectancy for Gabriel and basically push their opinion of “what would be the purpose of treating him with his low life expectancy.” No one understands chromosome abnormalities better than the parent living with a child that has the chromosome abnormality. Not only is that an insulting question, but even worse, it is an attack on the value of Gabriel’s life. Are doctors the ultimate judge of whose life is worthy of treatment? Why should Gabriel not be offered the same level of care as any other child? How is his life worth less than the other children that are born?
Who are we to tell anyone there is no hope. Even with the worst possible news there has to be hope. You can listen to statistics, doctors, specialists and yes even well intended friends and family but for me it’s about celebrating now and not what will come. We can’t live freely in the “land of when” because there is no peace. I know I have to, and try to spread, the importance of living in the “land of if.”
In Gabriel’s situation he should be celebrated like any other expected bundle of joy. He deserves a baby shower, cute pregnancy photos, super awesome onsies that say “Mandy Rocks!” and the laughter and joy that comes with celebrating a new life. We shouldn’t be celebrating him by always thinking of when something happens to him, we should be celebrating and loving him and if something happens, then he will know what true love and faith feels like.
*all names and photos were used with the permission of the families involved*