March 16, 2017

The appointment began at 9am. I was quite apprehensive and was suffering from a migraine due to very little sleep and heightened anxiety. Olivia was really excited to go to London on the train and see Daddy at the doctor.

We were at Great Ormond Street Hospital for a 5 hour Spinal Assessment, which needed to take place to ensure Olivia’s tiny body could withstand an invasive neck surgery within the next 3 months.  We met one-by-one with a Respiratory Paediatrician, Cardiologist for an Echo and ECG, Anaesthesiologist, Medical Illustrator, Occupational Therapist, Physiotherapist and Paediatrician. The final appointment was to draw blood, which was quite traumatic for poor Oli.

The doctors were very thorough and asked many questions that made my head spin. There are so many risks involved with having an invasive neck surgery, which doctors have never performed before on such a small child. Due to the rareness of her condition, no London-based doctors have ever seen a child with Goldblatt Syndrome. My day ended with a heavy dose of migraine pain relief!

We were able to head home at 4pm, at which point we hopped on the train, both of us quite knackered.  It was an emotionally draining experience, but the most enlightening appointment was with the Anaesthesiologist who told me to “Trust the surgeons. They are the best in the UK!”  I’ve been having a difficult time with this statement lately, due to the struggles I’ve faced with my concerns being heard, and realised if the trust is not built, I cannot go ahead with the surgery. This is one thing I told myself I must work on.

Although we both struggled to get through the day, Olivia gave me a big hug and kiss when we got home and said, “Thank you for taking me to the doctor today, mommy!” My sweet angel.

God, please give me strength.

With love,
Mom xo