The timeline in a nutshell:
7 July 2006: Comprehensive foetal development scan at 21 weeks’ gestation. Everything looks normal, no defects detected.
20 November 2006: Zoe is born via scheduled Caesarean section. The neonatal nurse announces that her left thumb did not grow and there is a skin tag hanging off the part where her thumb should have been. She also has an extra thumb on her right hand. The attending paediatrician comes by to tell us – mistakenly – that the thumb was probably cut off by an amniotic band and that it could not have been prevented. He also mentions that she has a heart murmur, but it is probably benign and due to patent ductus arteriosus.
28 November 2006: We take Zoe to an orthopaedic specialist who checks Zoe’s arm for a radius (the absence of one indicates the possibility of more severe birth defects such as Fanconi’s Anaemia). There is a radius, but no thumb metacarpal. He mentions that she can have surgery to remove the extra thumb when she is older.
4 December 2006: We take Zoe to a paediatrician near our home because she has the sniffles courtesy of her sister. We mention the murmur to her. She listens to Zoe’s heart, says immediately that the murmur is not a PDA one, and refers us to a paediatric cardiologist in private practice. A few hours and $800 later, we have a diagnosis: a large perimembraneous ventricular septal defect. Zoe will need daily diuretics and blood pressure medication, and open heart surgery to close the hole. Because there is malalignment, closure by catheterisation is not an option.
10 April 2007: We decide to get a polyclinic referral to KK Women’s and Children’s Hospital to see the cardio team there. At the first appointment, Zoe gets an ECG and an echo.
4 May 2007: The first date given to us for surgery comes and goes uneventfully because the hospital forgot to order a kidney scan to ascertain if Zoe’s body would be able to cope with surgery.
16 May 2007: We are admitted for surgery. Zoe comes out of the OR at 6pm and is settled into the Cardiac ICU.
18 May 2007: We are informed that X-rays show that Zoe has a hemi vertebra. It is not serious and will not require any intervention unless it develops into scoliosis, which is not likely as it is only one vertebra. With her catalogue of conditions, she has VACTERL association.
22 May 2007: Zoe is judged well enough to be moved to the Step-down Unit.
24 May 2007: A/P Teoh Lam Chuan, hand surgeon, swings by after a surgery to meet us and look at Zoe. He orders an appointment after her discharge and assures us that we have options for Zoe’s hands.
26 May 2007: We are told that Zoe has a subcentimetre simple ovarian cyst, and an enlarged spleen. A scan is scheduled for the spleen.
27 May 2007: Zoe is discharged!
6 June 2007: Ultrasound shows spleen is normal!
11 June 2007: The surgical team discharges Zoe from their service as all is well.
Sometime in July 2007: We see Prof Teoh, who lays out a plan for Zoe’s hands, specifically fusing the two thumbs on her right hand to make a more stable digit, instead of removing the smaller one.
13 December 2007: Zoe undergoes surgery to fuse her two right thumbs into a single thumb in a Bilhaut-Cloquet Procedure.
17 December 2007: The surgical dressing is removed and we get to see Zoe’s new thumb for the first time.
10 January 2009: Zoe is admitted for Kawasaki Disease. Echo shows mild dilation in the right coronary artery. She receives IVIG on Day 6 and is cleared for discharge, but subsequently develops Bell’s Palsy, a rare complication of Kawasaki Disease.
16 January 2009: Zoe is discharged with one month of aspirin therapy per normal KD practice.
28 April 2009: Three months after diagnosis, a follow-up echo shows that the arteries are all normal and everything else looks fine. She continues to have follow-ups with the neuro, ortho, cardio and eye teams but is not on any medication and is healthy and happy.
5 October 2009: Zoe is diagnosed with asthma after a late-night trip to the ER. She is prescribed salbutamol.
