There’s no point in prolonging the inevitable, is what I was told at my hospital appointment on Tuesday 14th November. Your baby has a 90% chance of death. My optimism kicked in and I responded:
“So there is a 10% chance he will live, what if he is in that 10%”.
I was then reminded that the miracle cases I’ve seen in the amazing Facebook groups I’ve joined are the exception and not the rule.
In my opinion, and in the words of one of my most admired inspirational speakers Les Brown;
My son Jermiah Moses is a blessing directly from God. My husband and I believe that he was given to us especially. God knew that this special little boy, innocent and completely vulnerable would need parents bold and faithful enough to bring him into this world. It is not an easy decision to continue a pregnancy knowing that the baby may not survive and will be severely disabled. In fact, I personally cannot condemn anyone that decides to discontinue their pregnancy under such circumstances. The fear of the unknown is a powerful driving force that can lead us into making difficult decisions that we otherwise wouldn’t choose. I know that the option to terminate, difficult as it would be, would have been easier for me than to continue the pregnancy. We honestly have no idea what complications Jermiah will face. He may be able to breathe independently or he may not. He might be born with sucking reflex and feed naturally or he may require support through a feeding tube. We have been told that he will be severely mentally and developmentally impaired, that he’ll never walk, talk, sit up or anything. He will be like a baby for the rest of his life; assuming he will live.
However, I have a very different opinion. I believe that Trisomy 13 affects individuals in very different ways. I do not believe that Jermiah’s life ability can be prescribed even before he is born. As knowledgeable as the doctors may be, God has the final say. Jermiah deserves a chance at life.
It torments me that my neonatologist has stipulated that they are only willing to offer palliative care. To date, I have no idea what that looks like and to be honest, I’m disinterested anyway because it is not what we desire for Jermiah.
We are Jermiah’s advocates and whilst he is unable to advocate for himself we have to champion his rights. We want him to be treated as any typical baby would be based only on his vital signs and not his Trisomy 13 diagnosis. We want for him to receive the best care possible and not be treated or valued any less because Trisomy 13 assumes he is incompatible with life. Every baby is unique, our DNA is unique and how it presents in this unborn baby is a mystery that God alone has full knowledge of.
I have made the decision to ensure that every moment of Jermiah’s life is filled with hope, positivity, and encouragement. I have chosen to surround myself with positivity so that it can directly impact my unborn son. There are days when I fall victim to my circumstances and I curl up into a ball focusing on the challenges and negativity, but I realise this is not conducive my health nor the health of Jermiah. Google, as awesome as it is, has probably been the worst battleground for me. Whenever I’ve researched Trisomy 13 I’ve been plagued with images of severely deformed babies and negative statistics for the longevity of life. I’ve now stopped researching. Instead, I envelope myself in uplifting scriptures, praise music, dancing, singing at the top of my voice despite my croaky voice! I laugh lots, spend quality time with family and friends, ensure that I go out and enjoy food and mocktails during my “Me Time” and try to remain as positive as possible.
We firmly believe that God alone has the final say. I understand that my neonatologist has a responsibility to present us with the facts, the knowledge he has through his experience. In all honesty, due to the rarity of the condition, our neonatologist has only ever dealt with two cases of Trisomy 13 in all his years of experience. So that is enough to reassure me that Jermiah has a chance at life because the statistics are so skewed due to the high level of termination and significant deformities leading to death in those that do survive birth. As mentioned in previous posts, Jermiah doesn’t present with any severe abnormalities that are life-threatening. Therefore his chances of survival are more favorable.
I really do want to encourage you reading this, I know that many of us are presently experiencing trials and challenges. Life is a fighting territory and if we don’t fight for what we want, what we don’t want will take over. We have to remain positive and hopeful through our trials, focusing on the possibilities rather than the challenges. This week I heard an amazing and encouraging testimony from someone. This person shared with me that their home was going to be taken away due to thousands of pounds in debt, now this individual could have simply given up and resided on the fact that they were now homeless. Instead, the individual cried out to God with all their heart, all humility and laid bare and pleaded for a miracle. That same week that proceedings had begun, a check from the Inland revenue, tax refund for one thousand pounds less than the total sum of their debt landed on their doorstep! Can you believe it? They were able to keep their home and now share that testimony of faith and positivity with others. There is so much power in the words we speak, the things we put out into the universe and within our own minds. If we believe in the possible then we can make things happen, if we believe in the negative and fall prey to our circumstance then, of course, we will become victims. A fabulous and inspirational youtube video about a young man who managed to turn his life around based on the power of words was definitely the highlight of my week. Listening to this young man filled me with the greatest hope. I really encourage you to click this link and be inspired.
I am speaking life and positivity over Jermiah Moses, I am believing and trusting that my son will live. We were initially told he may die in utero, well; he is still here. We have now been told he will possibly live up to 2 months unless dies shortly after birth but no more than 1 year. I’m confident that he will defy the odds. I know some may think I am crazy, like my neonatologist who has given me until Monday 27th November to change my mind and accept their decision to withhold intervention from my son because I am only ‘prolonging the inevitable’.
I will reiterate, I am positive, hopeful and optimistic. I truly believe God alone has the final say. If the Lord does take my son then we will deal with that situation at that time. But right now, he is alive, I feel him moving with great strength daily and I firmly believe he will survive.