Mirakel
Good evening my name is Samantha please find my journey here with my son Mirakel- my emotional journey that I experienced with the NHS. Emotions I can’t even begin to tell you my work for the past nearly 9months has been ripped apart with many mixed messages from the NHS all being because the knowledge regarding my sons illness while pregnant was so small. I was told so many different statements leading me into nearly termination of my pregnancy on many occasions.
I went for an early scan and received devastating news. They told me the pregnancy wasn't viable and scheduled another scan the following week. Unfortunately, the next scan confirmed the absence of a heartbeat. My world felt shattered. They advised waiting two weeks to see if my body would naturally miscarry. If not, they would perform a surgical procedure (D&C) to manage the pregnancy.
Two weeks later, with no signs of miscarriage, I was booked for the D&C. However, I received another upsetting call – the doctor wouldn't be available until the end of the month. The thought of carrying a lost pregnancy for so long was incredibly difficult.
By this point, the emotional toll was significant, compounded by the loss of another pregnancy the year before. I sought support from my GP and began taking antidepressants.
On arrival I went into have a final scan and while the scan was happening my fired heard a heart beat! My whole world was just full of emotions and my head was all over the place .
The journey got worse from there as I went to my 12 week scan to be told the fluid fold on the back of baby’s neck was 3.6 and the cut off was 3.5 so I was referred to fetal meds in Cheltenham the week later.
During my follow-up scan, the consultant acknowledged the previous concerning results. However, he offered some positive news: the baby definitively did not have Patau or Edwards syndrome. While the Down syndrome risk remained from the prior scan, the new measurement (nuchal fold at 1.4) was normal, which wouldn't have warranted another appointment. This left me understandably baffled and overwhelmed with mixed emotions. Unsure of what to do next, the consultant suggested a NIPT test to gain further clarity.
When the NIPT resulted came back inconclusive and this left further confusion to whether the baby had down’s syndrome, Patau’s or Edwards. The next step was to book in for a further scan for clarity.
The prenatal scans were reassuring. My baby was growing typically, his brain developing normally. Yet, a nagging worry persisted – the possibility of soft markers. Despite repeated inquiries, the specialists found nothing concerning, and my hope grew. However, at the 16-week foetal medicine appointment, the doctor dismissed the possibility of mosaicism (a condition where some cells are abnormal), leaving me confused.
By 20 weeks, a new consultant delivered a bombshell. Amniocentesis confirmed Patau syndrome, a devastating diagnosis. Shocked and heartbroken, I grappled with the news while planning a future that seemed bleak.
Further complications arose at 29 weeks – a suspected water leak and potential need for delivery. The pediatrician presented a grim outlook, emphasizing palliative care due to Patau's. This contradicted the previous consultant's assertion of my son's viability, adding to the emotional turmoil.
Mixed messages continued. One doctor suggested induction, another reversed it due to a medication conflict. My world felt like it was collapsing. Through research and persistence, a solution emerged – inducing labor without the medication initially deemed necessary. Yet, the wait for a coroner's response added another layer of stress.
The confusion reached a peak when the consultant backtracked, stating intact membranes – a contradiction to the earlier leak diagnosis. Physically and emotionally drained, I underwent a C-section at 29 weeks and 5 days due to pre-eclampsia.
My son's NICU journey was a brutal test of resilience. Days of hope alternated with terrifying pronouncements of deterioration, kidney failure, and the specter of Patau's taking hold. Through it all, I refused to give up. Each time, there was an underlying cause – a gut infection, blood transfusion need, or sepsis. My unwavering belief in him proved right.
The emotional toll has been immense. Antidepressant medication helps manage the trauma and nightmares. This journey has been an emotional rollercoaster, filled with conflicting information and constant worry. But through it all, my love for my son and his fighting spirit kept me going.
I just physically can't get my head around the emotional neglect with so many mixed messages if I wasn't as strong as what I have been my son wouldn't be here. He is now over 5mnths old but fixed age from due date 10weeks old he is at home with us doing great growing well and doing everything they said he wouldn't xx