Is there ever a way to deal with difficult news? I know that things could be even worse but every time we have a scan I’m filled with intense emotions of pain and heartbreak. Having a baby with Trisomy 13, Patau syndrome is so challenging to deal with.
We spent most of the day in hospital on Monday. Our first appointment was an echocardiogram which looked at the blood flow in and out of my heart and it’s overall function. Thanks-be- to-God there was nothing untoward and everything is going really well. I was ecstatic to hear that. Our second appointment was equally pleasing, my second glucose tolerance test to see if I have gestational diabetes was also negative; just like the first one a few months ago. It is an awesome feeling because at my very first consultant meeting I was told these things were a certainty. In fact, my consultant was very surprised and asked if I’d lost weight or changed my diet. I didn’t say it to her but I know the answer is prayer. God’s favour for sure.
Our final appointment which was the Fetal scan was not so positive; in fact, it had its positives and negatives. Baby Jermiah Moses was 26+1 week gestation on Monday 16 October 2017.
1.We know that his heart appears okay, the only minor challenge is the right side is larger than the left. Many babies with T13 have problems with the formation and function of the heart, Jeremiah’s issue appears insignificant in contrast to many other miracle T13 babies.
2. His brain and head size appear normal (no additional problems like fluid etc) we were reminded that he will have significant learning difficulties despite the normal brain appearance. We were told it would be like having a 1-year-old forever if he lives. He’d never sit up, walk, talk, wash independently, use the toilet independently, etc.
3. He has polydactyly fingers and toes on each hand and foot (extra digits).
4. He has a duplex kidney on the left. So the right kidney is normal but the left looks like it has two tubes connected to the ureter (the tube that drains urine into the bladder) rather than the normal one tube. This isn’t too serious as 1 percent of the population has it, any of us right now could be affected and not even know. It does mean potentially lots of urine infections and antibiotics.
What I found most challenging was the conversation that followed the scan. My consultant, without any intent to cause hurt, was very pragmatic in his approach. He stated that the first priority for them as consultants is my life, given the complications I faced last year, if anything were to go wrong they would sacrifice Jermiah’s life to save mine. No mother wants to hear words like that. I understand the situation with my practical head my heart is ripped to shreds. In addition, my consultant continuously referred to my son as ‘it’ even though I responded saying ‘he’. His words of continuous negativity were cutting and painful. He reminded us not to be too hopeful despite the scan results showing Jermiah Moses has a normal in appearance brain and heart. He reminded us that the majority of T13 babies die within the first few hours of the birth with some living up to two months and very few up to a year.
I interjected his speech and told him that I was associated with a few T13 groups and had seen for myself many miracle cases of babies defying the odds and living amazing and enjoyable lives; richly blessing others. He looked me straight in the eyes and said “yes but they are the exception, not the rule”. I could feel the mounting pain inside of me. I’m still holding onto hope that my Jermiah will be an exception.
I understand that my consultant has a responsibility to prepare me for the worst case scenario. I understand that he doesnt want to present us with any false hope. But, I know that miracles do happen today. October 19th 2017 marks one year since I almost died. I lost approximately 5 litres of blood following an emergency c-section, I was in theatre for over 9 hours and recieved 5 blood transfusions. The staff were joyous and shocked that I survived.
My husband was also given 3 months to live after being diagnosed with non-hodgkins-lymphoma 19 years ago and was told he would never have children again. He has ultimately defied all odds and is a living testimony.
Somehow, I have a feeling deep-down inside that Jermiah has inherited our fighting spirit, something tells me that he too will be a living testimony and astound the doctors and even us. Perhaps its hope, perhaps its unrealistic but its what I feel.
I was so encouraged today, I contacted a lady, her sibling has Full Trisomy 13 (FT13). They didn’t know until the baby was 3 days old, born with various complications the baby’s odds didn’t look good according to the medical team. Today this miracle child is 8.5 months old and doing exceptionally well. I cried as we spoke, her encouragment and faith was yet another moment of inspiration for me and Jermiah. I heard her sibling in the background, the sound was beautiful and pleasing to my ears.
As you journey with us, I am again asking for your positive thoughts, energy and prayers for my son. I want my baby to live with all my heart, I know it will be challenging having 5 children and a severly disabled baby but I know God will proivide for our needs.
Sharing this journey helps to ease the pain, the encouragment and support ive recieved so far has been amazing. I just pray that our story can inspitre you, encourage you and reind you to never give up. we will fight for our son, you fight for whatever it is you desire. I firmly belive if we don’t fight for what we want, what we dont want will take over. In want my son to survive.
Please comment, share and most of all, be encouraged.