Hello Emerson

Emerson came to the world surrounded by so much love from family, friends, amazing surrogate and her family and friends, and medical team at starship hospital. It has taken us nearly 5 years and we are finally dads to a strong, brave, and beautiful Emerson. From his first procedure at hour 2 to the 8 hour long open heart surgery on day 7 Emerson has smashed all the goals and we got home 🏠❤️️ 9 days after surgery. It has been the most joyful and the toughest time of our lives but wouldn’t trade a thing.

Emerson was diagnosed with Transposition of the Great Arteries (TGA) and Ventricular Septal Defect (VSD) at 20 week anatomy scan. This meant many more scans and appointments before birth. We had questions after questions for fetal medicine team at Auckland hospital. How many times has the each surgeon have done the surgery? What is the pathway from birth to surgery to discharge? What are the risks? Can we have physical contact with him before/after surgeries? Will he be able to feed orally or will it be all via NG tube? Is there an accommodation option for us at the hospital overnight? Who can be in the operating theatre for C section delivery? What name is his patient label is going to show? We joined Facebook group for TGA, connected with other parents who have children with TGA to get first hand experience of time leading up to birth and everything following birth. Hearing other stories and how well the children are doing gave us a lot of hope despite fear at the back of our minds. We felt as prepared as we could be and accepted unknowns and all possibilities. We had been attending antenatal class with EMPWR and the last class was the evening before our delivery date. Just in time learnings!

Both NICU (Newborn Intensive Care Unit) and PICU (Paediatric Intensive Care Unit) beds were required for his birth and we were told delivery day was going to be early to mid-week for best staff availability. We had requested delivery date of 24 May months ago and 2 weeks before 24 May we were told by our OB that was our date. 24 May 1pm! We finally had the date with caveat it could still change but he had a priority given heart conditions.

At our final fetal medicine appointment at 37 weeks, we toured Auckland City Hospitals, first was National Women's on level 9 (we were not able to tour NICU), we then headed off to Starship National Childrens Hospitals PICU on level 2, up to Ward 23B (Paediatric Cardiac Ward) on level 3, and Ronald McDonald House Charity Family Rooms (RMHCRM) for families that live in Auckland on level 3 within Starship Hospital. It all felt like a maze going around in circles but this was all going to become very familiar soon. We were at brink of tears multiple times during the tour as we saw the rooms other families and children. It all started to feel very real.

Then it was 24 May 2023. It was such a surreal feeling leaving the house in the morning knowing that we were going to be parents in matter of hours. It started with us circling the hospital carpark and ended up at offsite parking and 1o minute walk to the hospital. Wendy and her husband were already waiting in ORDA (Operating Rooms on Day of Admission) on level 9 of National Womens Hospital. A lot of nervousness and excitement simultaneously. We changed into scrubs, then our OB popped in to brief us, get consents from Wendy, and to let us know about potential change of plan on who are allowed in the theatre. The team really advocated for us to the last minute but only one of us was allowed in and other in resuscitaire room. This was hugely disappointing for all of us as there was no reason given for last minute change in decision other than it is the policy.

We entered the theatre and got oriented by the team on who they are and where we were going to be. We could not believe we were there, moments away from birth. Two of us in the room while anaesthetics team prepared Wendy. It was finally happening and we were about to meet Emerson for the first time. Before long we were in places and procedure has started. Emerson Jaeyoon Broadchoi was born at 1:44pm on Wednesday 24 May 2023 weighing at 4.26kg and 53cm long. He came out feet first and there was no time for delayed cord clamping. Umbilical cord was cut within seconds, there was no cry and in the short seconds the mind raced all over the place. Followed him into resus room. The team from NICU were already in resus room waiting for Emerson, they got to work straight away. John cut the umbilical cord short. Then there was a short and quiet cry from Emerson and we rushed from the theatre across to NICU.

Emerson's oxygen saturation level was lower than anticipated based on echocardiogram before birth and was saturating under 50%. Once in NICU he was immediately intubated and peripheral lines were inserted into each hand. In a few moments the cardiac team visited Emerson to do echocardiogram and other diagnostic tests. The cardiac team explained that Emerson will need balloon atrial septostomy (BAS) procedure straight away. We knew this was possibility but was hoping to avoid. The prognosis before birth was that he is unlikely to need BAS or at least not immediately after birth. We headed out of NICU across to the Maternity recovery area where Wendy and her husband was, the surgeon explained the procedure, risks, and get consents. All 3 of us signed the consent form and off went the surgeon. Wendy then called the social worker at Oranga Tamariki. Within a minute we received the social worker approval, making us the guardians for Emerson and allow us to make medical decisions for him.

Emerson had his first operation at hour 2 of life and he was the bravest and the strongest boy already and hit the target O2 saturation of 75%. 25 hours after birth he was extubated but had to move to CPAP straight away with oxygen.

We got to hold him for the first time 28 hours after birth. Our very first cuddle with Emerson. It was overwhelming holding him with all the wires attached to him. Emotional rollercoaster was only just starting. He had a chest x-ray overnight and it confirmed upper right lung collapse. They elevated his right side to support his lungs. By 48 hours after birth, he was off CPAP and oxygen and we got to have first skin to skin contact. He had his first feed at 58 hours old! All of 5 ml of formula that he was allowed to have. This took some convincing and pushing the team to make this happen as supply of breastmilk had not been established yet and we were all under stress. This felt like the beginning of advocating for Emerson to get the best we can provide him.

Monday (day 6) I had the opportunity to have open discussion with Beatle Treadwell - Associate Director of Midwifery – Māori Health and Equity about our experience to date. Everything from the name at birth and the name change requests made before birth through OB and fetal medicine teams but had not happened, the last minute change on who could be in the theatre, lack of men's bathroom in NICU (men have to get buzzed in and out of the ward through the security doors each time they wish to use the bathroom) and everything in between. There are estimated 4o+ surrogacy births every year in NZ. It is these 40+ families that are denied rights to have child named at birth and given opportunity be at births in case of c-section. With our formal feedback since, these are being reviewed by the hospital.

There were many reasons given for why the name couldn't change until discharge but the main risk appeared to be with NZ Blood requiring NHI and full name among other details to match for blood products. It meant he would require another heel prick and blood cross match, and new labels to be printed with new names. By that afternoon the name change had happened and Emerson was finally Emerson J Broadchoi and no longer "Baby of Wendy" with her last name. This was a big deal for us. Timing of the change was beyond our control but it caused mixed feelings from the care teams as it was right before new scans and meeting the cardiac surgeon for Emerson but everyone got over it soon enough.

Tuesday morning was Arterial Switch Operation (ASO) day with transfer from NICU to Starship Hospital pre-op at 7:45am. We had gotten to know many of NICU team and their amazing care for Emerson and us. We could not have survived without them and cannot say enough thanks to the NICU team. But it was time for next stage for Emerson. We were very emotional as we prepared for the transport. Emerson looked so tiny in the cot all of sudden. The walk from NICU on level 9 of National Womens Hospital to Starship Children's Hospital pre-op on level 2 (at the opposite end of Auckland City Hospitals), was even more emotional and felt like it lasted an hour. We travelled to pre-op with 2 nurses, 1 doctor and all the portable medical equipment we might require. When we were done verifying his identity, the surgery, and consent for anaesthetics it was time to let him go into the surgery (this happened so quickly). Just standing there seemed like the most difficult thing we have done in our lives. We broke down big time! We headed back to our room at RMHCRM where we cried for what felt like 2 hours or until our tear ducts we completely dry.

We took advice from the medical team and other TGA parents to leave the hospital for the day. We left the hospital for the first time in 7 days. We had a brunch. It was amazing to see life still going out outside the hospital walls. We went home, watched some TV, did some laundry, and went out again. At 1:47pm we received first update via phone that Emerson was off ECMO bypass. We cried for a while in a carpark, happy tears. We composed ourselves again for some late lunch. We were on our way back to the hospital (in Auckland evening rush hour traffic) when we received the second call. This time from the surgeon saying Emerson was out of surgery. Ajay would make a good confessional segments on a reality TV shows! Once everything was explained in chronological order, Ajay revealed that Emerson  had to go back on ECMO bypass, the VSD was larger than scan but he was able to close it and Emerson is off bypass again for the second time, his chest closed and he is in recovery before moving to PICU. We were worried he would go to PICU still on ECMO with his chest still open.

We got to see Emerson again by 6pm in PICU. Our first reaction was a sigh of relief, maybe we had cried too much already. Emerson looked so much better than we anticipated. We saw a lot of photos of other babies from the TGA group and that somewhat prepared us on what to expect. He was still our beautiful little boy. The surgical team were just finishing up their hand over to the PICU medical team, Emerson's nurse for the evening explained what all the wires, drains, tubes, infusion machines and other equipments were. Over the next 3 days we had a lot of ups and downs including pure joy with cuddles, skin to skin, panics over O2 desaturations, equipment failure, and going back on pacemaker. 8 days after he was born we got to see his hands for the first time. He always had peripheral lines and sponge paddles on his hands until then.

3 days after the surgery on Friday, we skipped PHDU (Paediatric High Dependency Unit) and transferred upstairs to Ward 23B IOA (Intensive Observation Area). This was extremely stressful as it was the first time since his birth, the care is being deescalated. It was an absolute shock to us how "relaxed" the team was compared to NICU and PICU. We had gotten used to the rhythm and protocols and this new way of doing things did not seem good enough. It really took some adjustment, reassurance from the nurse specialist supporting us and we really wanted to go back to PICU for a while. We had more rollercoaster of emotions with progress and setbacks but we moved to a side room on 23B on Sunday. Another de-escalation in care, no more nurses by his bedside 24/7 for the first time. This also meant we needed to move out of Ronald McDonald family room and only 1 of us can stay in the side room with Emerson overnight. As only one of us could stay overnight now we alternated 2 nights each at the hospital. Then realised how much harder it is to do it alone, even with nurses help.

Over next coming days more and more sensors, wires, cables, tubes came off Emerson. We even got to stop weighing each of his nappies. Emerson was able to have all his feeds via bottle, and didn't need the NG tube anymore. We even got to take him down to level 2 for a x-ray all by ourselves. It was a shock to the system after being in our own bubble all this time but having to be in a common waiting area with outpatient children and parents.

On Tuesday afternoon, the nurse practitioner asked Nick a question "how would you feel if you were discharged tomorrow?". "TOMORROW" I said and changed the topic, it seemed too soon. It has only been 7 days since the surgery and surely Emerson is not ready and we are not ready. By Wednesday afternoon we felt ready to go home but there were still more discharge checklists activities to be ticked off. The most challenging and stressful one was the 2 hour carseat test. Emerson needed to be in a carseat on top of the cot and his oxygen level monitored for 2 hours without getting out of the carseat to ensure he does not desaturate in a carseat. It was the very first time he was in that half sitting half lounging position and he really did not enjoy first 30 mins of it but eventually he settled (after a lot of Google and YouTube) once we figured out how to position him correctly without taking him out. The next challenge was to get his newborn hearing check completed after about 7th visit since birth, doing it as an outpatient appointment sounded too difficult.

Thursday, 8 June - going home day! It was a long day, full of mixed emotions finally packing up and getting ready to leave the hospital, saying goodbye to the team, Emerson in carseat. Excited, nervous, joyful, anxious, happy, sad, overwhelmed, and many in between all at the same time but we finally got there. Discharged to home right at evening rush hour traffic.

Emerson had his first surgery on hour 2, 8 hour open heart surgery on day 7, and discharge to home on day 16 from birth. He is the bravest, the strongest, the most resilient boy. We are the proudest parents to Emerson. We cannot describe how much love, appreciation, care, and support we have received from friends, family, Wendy and her family and friends, NICU, PICU, Ward 23B, Heart Kids, Ronald McDodonald House Charity. Thank you, thank you, thank you. Now the parenting starts!

Resources

1. Starship Hospital Starship is New Zealand’s national children’s hospital, firmly focused on accelerating world class healthcare for all New Zealand children. There are more than 140,000 patient visits to Starship Child Health each year including around 1000 outreach clinics where Starship clinicians offer specialist consultation and support to their peers all around New Zealand.
2. Starship NICU The Newborn Intensive Care Unit (NICU) looks after babies born to parents from Central Auckland, West Auckland and North Auckland. They also provide NICU care for babies from other New Zealand regions when required.
3. Starship PICU is the only dedicated paediatric intensive care facility within New Zealand. PICU provides a national service for children requiring intensive care for longer than 24 hours and a regional service for all children requiring intensive care or high dependency care. PICU's national service role is steadily growing with more than half of children coming from outside the greater Auckland region.
4. Starship Ward 23B Paediatric and Congenital Cardiology Service. They are the sole provider of cardiology and cardiac surgical services for infants and children with congenital and acquired heart disease in New Zealand and parts of the Pacific Basin. They provide cardiac care across the life spectrum with a fetal cardiology service through to care of those born with congenital heart disease who are now adults (ACHD).  Continued diagnosis and treatment improvements mean our patient population is growing and with it, our service.
5. Heart Kids NZ is the only national organisation in Aotearoa NZ dedicated to providing free lifelong care and support for children, teens, adults and whānau impacted by childhood heart conditions.
6. EMPWR Having a baby is so often steeped in heteronormativity, that it can be a barrier to rainbow families accessing education about pregnancy, birth and parenting. Mainstream antenatal classes are often not an inclusive space for LGBTQIA+ parents. They often split the classes into groups: the 'mums' and the 'dads' . So for people who don't identify as mum or dad or perhaps have two mums in their whānau, what do they do? Which group do they go in? EMPWR's antenatal classes are designed differently; they are grounded in reproductive justice, bodily autonomy and self determination. They are for any parent who wants to experience antenatal education in a new and innovative way.