Supporting Us

Throughout my pregnancy we have been overwhelmed by the love and support shown to us by family and friends. Thank you for your prayers, lovely comments, emails, sweet text messages and hugs – we really do appreciate them 🙂

Lots of people have also asked how they can support us in coming weeks and months once Baby Cameron arrives. So to help avoid confusion here are three areas in which you can help us and Baby Cameron: prayer, visitors and meals.

Prayer 

The most important and helpful way that you can support us is in prayer. The picture in the Bible is that God delights to hear his people pray to him, and works through their prayers to bring about his will in our world.

A particular Bible verse I’ve found comforting throughout my Christian walk is Philippians 4:6-7:

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Prayer is not about eloquent words or a special time or place, it’s about expressing our dependence on God. And prayer is not effective because we “do it right”, but because we have a great God who through Jesus graciously listens.

I’ve been reminded a number of times in the last 12 months that God doesn’t always answer our prayers in the way that we would hope or expect. But he does answer them, according to his perfect will and purpose.

So what to pray? Here are some suggestions:

Give thanks …

  • For the excellent medical care we have access to. For the doctors, nurses, support staff and others at the Westmead hospitals. For their skills, education, knowledge and care.
  • For our family and friends and they way they have supported us throughout my pregnancy.
  • For Jesus, that through his death and resurrection he has given us a hope beyond this world that can neither perish nor fade.

Pray …

  • That ultimately our trust would be in Jesus and not in ourselves – no matter what happens.
  • For a smooth labour and delivery so that both the baby and I are as stress free as possible.
  • For wisdom for the specialists making decisions about the baby’s surgery and care in NICU.
  • For wisdom for us making decisions for how best to care for and love our baby.
  • That our baby would grow up to be strong and healthy, but more than that, that they would trust Jesus as their Lord and Saviour.

Visitors 

As I mentioned in my last post, welcoming babies into the world is usually a time of great excitement – involving lots of visits and cuddles. But for Baby Cameron those things might (will) be delayed a little while.

While the baby is in the Grace Centre (read more here about what we’re expecting the baby’s first few weeks to look like) Gus and I are able, in fact encouraged, to visit whenever we like. However, there are strict guidelines for any other visitors. There are limited visiting hours each day, and only 2 visitors are allowed to be with the baby at a time, one of which needs to be Gus or myself.

We are also expecting the baby to have regular medical checkups throughout the day and night, which can make time very disruptive. And just generally, if you’ve ever spent time in an intensive care unit you will know how emotionally confronting they can be – something I think is only intensified by it being a newborn ICU.

So, as we have no idea what the first few days / weeks of Baby Cameron’s life will look like, we have decided to limit visitors to our immediate family and several close friends.

Our intention is not to offend or hurt, but to focus on Baby Cameron’s care and wellbeing. And so we hope you will understand and support us in this decision.

Once we have a clearer picture of what our time in hospital will look like and more of an idea of when we’ll be coming home we do hope to be able to see more of you!

And we will try to keep sharing updates (and photos!) of Baby Cameron so that you know how we’re going.

Meals 

The third way some of you have asked if you can support us is by providing meals, thank you so much for these very generous offers.

We know from experience spending time in ICU when Gus’s sister Fleur was sick last year that you often lose track of the time of day, weather, news, and other general things going on around you. Remembering to eat usually goes out the window too!

So to make things simpler and ensure we eat properly and regularly, we have decided to order Lite n’ Easy meals during our time at WCH. Their delivery divides everything into packages labelled for particular meals e.g. “Day 1: Lunch” which removes the guesswork from cooking / cleaning up.

We recognise though that the time after we bring Baby Cameron home will probably be quite tiring. It’s also unknown at this stage what ongoing medical care the baby will need. Not having to cook much during that time will probably be quite helpful! We will see how things go and make that decision when our stay at WCH is coming to a close.

Thank you 

We are so excited to welcome Baby Cameron into this world, and are particularly thankful to God for the wonderful friends and family he has surrounded us with. Thank you.

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Preparing for Hospital

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As of this week I’ve reached full term (37 weeks) which is a great answer to prayer as Baby Cameron is now big enough to arrive safely when he or she is ready!

And as we get closer to my due date I’ve finally packed my hospital bag, started organising the baby’s room and spent lots of time collecting a plethora of baby gear.

Preparing for a baby is a time of great joy, excitement and wonder for new parents. And we’re no different. We’re so looking forward to the arrival of our new, precious family member – our child who we can’t wait to cuddle, care for and watch grow up.

But we also know our experience is going to be different to most other families. So today I want to share a bit about how we are preparing for hospital, answering some “frequently asked questions”.

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After receiving the diagnosis last November we booked in to meet our new specialist team from the Westmead Public and Children’s Hospitals. I have an obstetrician who only sees high risk mums and babies along with a high risk midwife. The baby also has a cardiologist from the Heart Centre for Children who has monitored its progress in utero. And once the baby is born we’ll add a paediatrician, cardiothoracic surgeon, neonatologist, lactation specialist, social worker and other nursing and support staff to that list.

As you can imagine, seeing all of those people could become overwhelming very quickly! But we’ve found that the staff at Westmead have been excellent at looking after us and preparing us for the weeks and months to come.

Preparing Normally  

One thing that has been consistent across all the medical staff we’ve met is the focus on having a normal pregnancy. As our cardiologist said “you’re preparing to raise a baby that has a heart problem, not a giant heart with a small baby attached”. The temptation is to get so preoccupied with the baby’s heart condition that I forget about all everything else associated bringing a child into the world.

So as we prepare for the baby’s arrival we’ve been doing everything normally – including praying and reading about how we can be Godly parents raising our child to know Jesus.

Labour 

One thing that has surprised me is that the doctors are happy for me to have the baby naturally, when I expected our situation might mean a scheduled Caesarean. I think this is linked to preparing normally and because we’re at a hospital who look after sick babies all the time they will be ready for me whenever things happen.

There will be a lot of monitoring on me and the baby throughout labour, so they can keep an eye on the baby and make sure it doesn’t get distressed. The aim is to have the baby as happy and strong as possible so that it’s ready for what lies ahead – so we’re open to whatever intervention is needed to make that happen, but I will be aiming to give birth naturally.

After Birth 

Our baby will most probably need a ventilator to help it breathe as soon as it’s born. It will then need to have some scans and tests to work out if it needs surgery straight away or within a couple of days. To make that happen it will have what’s called an expedited transfer from birth at Westmead Public Hospital (WPH) to the Westmead Children’s Hospital (WCH, which doesn’t have a maternity ward). It’s about a 10 minute walk through internal corridors between the two hospitals.

So our expectation is that I will be able to have a cuddle with the baby after it’s born, and then it will be transferred to WCH on the ventilator machine with Gus by its side. I will remain at WPH for all the usual post birth stuff and to rest. During that time my sister Kate will be keeping me company as I’m sure it will be heart wrenching to see Gus and our little one go. The usual practice for mums in my situation is that they get to visit their baby at least once a day by being wheeled in a wheelchair down to WCH.

That is another incentive to me for having a natural birth, as it will mean I’m able to get up and move about much quicker than if I have a c-section.

Usually mums stay in WPH for 2 or 3 nights after their baby’s are born. If all goes to plan I hope to get an early discharge down to WCH and have a midwife come and check on me each day so that I can be closer to Gus and the baby.

The Grace Centre 

The Grace Centre for Newborn Care is the newborn intensive care unit at WCH. It looks after babies who require surgery or who have complex medical conditions. Premature babies usually stay at Westmead Public Hospital in the NICU there.

There are 9 ventilator beds and 15 high dependency beds in the Grace Centre, and nurses who look after the babies 24 hours a day. According to the current Bandaged Bear Appeal approximately 600 babies spend time in the Grace Centre every year.

If you’d like to find out more about the Grace Centre here is a video which they showed us before they took we had a tour of the ward (it does show babies hooked up to all sorts of monitors which might be a bit confronting for some people):

Breastfeeding 

Babies with heart problems usually struggle to feed well because they have less oxygen and so breathing and feeding at the same time is really hard. Couple that with surgery, lots of tubes and monitors and breastfeeding gets a bit complicated!

So, while I’m not going to be able to breastfeed our baby from birth, I hope to express milk that the baby will be fed via tube for the first few weeks of life until it’s able to breastfeed. Again we’ve found that at WCH they’re keen to have parents as involved as possible, and expressing milk is one way that I can closely participate in the baby’s care.

Accommodation

Most wards in the WCH have a recliner / bed so that one parent can stay by their child’s bedside. However, that’s not the case with intensive care. Instead, for the first week or two we are hoping to stay in the Parents Hostel which is located within the hospital. Gus will plan to stay there from Day 1, and I will be discharged there after my stay in WPH.

This year we’ve moved to a 20 minutes drive from Westmead as Gus has started working full time as an Assistant Minister at a church in South West Sydney. That has been a great answer to prayer – making attending appointments and familiarising ourselves with the hospital much easier than our previous hour+ drive!

I hope that helps to give some more insight into what we’re expecting our initial days in the hospital to be like. If you have other questions please don’t hesitate to ask or post a comment – we don’t have all the answers but you might raise a question we haven’t thought about yet!

I’ve found having opportunities to ask questions and learn more about places like the Grace Centre have really helped me to prepare emotionally and mentally for the baby’s arrival.

Of course I get teary when I think about what is to come, but I am so thankful to God for the medical care we have access to, and their obvious skill in looking after babies with heart conditions like ours.

Now back to setting up the nursery …

Understanding Tricuspid Atresia

I’m not sure about you, but until recently I knew very little about how one of the most important organs in our body actually functions!

If that description fits you too, here’s a diagram from The Royal Melbourne Children’s Hospital that shows how a normal heart works:

Normal heart
There are four chambers in the heart with the right side pumping non-oxygenated blood through the lungs which comes back to the left side of the heart oxygenated and ready to be pumped to the rest of the body.

Our baby has been diagnosed with a condition called Tricuspid Atresia. There’s a lot of information about it on google – and we’ve found some helpful, some fascinating, but most a bit overwhelming.

The following information comes from our discussions with the baby’s specialists, along with websites that they recommended to us. I’ll focus on tricuspid atresia, but for more information about Congenital Heart Disease (CHD) in general, have a look at the HeartKids NSW website.

Tricuspid Atresia

Tricuspid atresia is a congenital (i.e. present at birth) heart condition that affects approximately 1 in 10,000 babies born in Australia every year.

It is where the right side of the heart has not developed properly and there is no tricuspid valve, severely restricting blood flow to the lungs. Blood that returns from the body to the right atrium of the heart cannot directly enter the right ventricle, and must pass through a hole in the atrial septum into the left atrium and the left ventricle.

Here is a comparison of a normal heart and one with tricuspid atresia, also from The Royal Children’s Hospital Melbourne:

Normal heart

As for the causes? Recent research suggests 20% of CHD can be attributed to chromosomal abnormalities – with a common link to Down Syndrome (not likely in our case). However, for the vast majority of cases (80%) the cause is unknown, the condition has occurred during the baby’s early development.

We’re thankful for recent news that funding grants have been allocated to the Victor Chang Cardiac Research Institute for genome mapping to try and identify which gene is responsible for CHD.

Treatment

Have you ever wondered how a baby’s lungs and heart work while they are in utero and don’t need to breathe? I don’t think it had ever occurred to me before our CHD diagnosis.

A pretty cool feature of the human body is that while a baby is still in the womb, they have a vessel which recirculates blood around the heart and to the placenta which does the job of the lungs before birth. This vessel, called the ‘ductus arteriosus’ naturally closes in the first few days after the baby is born, because the baby begins to receive oxygen from the lungs.

However, for our baby the first step in treatment is to keep the duct open, which is first done by giving the baby antibiotics straight away after birth.

This gives the doctors time to work out what the heart actually looks like (done through a series of scans, including an echocardiogram), so that they can determine the next steps in treatment.

What follows is the generally expected plan for treating tricuspid atresia. But it’s also important to remember that every baby is unique and so this might not be how things pan out for our baby!

There is a likely three step plan for surgery:

  1. Blalock-Taussig Shunt Operation before 2 weeks old – this first operation involves inserting an artificial tube between the two sides of the heart, made from goretex material. After which the baby will spend 4-6 weeks in hospital recovering and being monitored.
  2. Bidirectional Cavo Pulmonary Connection (BCPC) at 4 to 6 months old – this operation is performed to connect a main vein from the upper part of the body to the lung circulation.The purpose of this operation is to improve the level of oxygen in the baby’s blood.
  3. Fontan Procedure at 3 to 5 years old – the final, and most permanent operation is the Fontan procedure. By connecting one of the veins directly to the pulmonary artery, all blood returning from the body passes through the lungs and picks up oxygen before being pumped to the body. This allows a higher level of oxygen saturation in the blood.

Surgeons have been successfully performing these operations for a number of decades. Long term quality of life is generally good, however further complications might require ongoing medication or a pacemaker.

I hope that gives you a general understanding of our baby’s condition, if you’d like to know more here are some of the websites that were recommended to us:

Receiving the diagnosis

Our baby was diagnosed with a congenital heart condition during the routine 19 week morphology ultrasound.

The scan takes about an hour and for most of the time we just sat in awe, amazed that yes we were really having a baby and that baby was moving around on the screen in front of us.

Towards the end of the scan the technician said she couldn’t get a good enough picture of the heart because of how the baby was positioned. This made me chuckle, as every other scan we’d had with my obstetrician the baby had been moving around madly or not in the “right” position for good clear photographs.

Then she suggested we see a fetal cardiac specialist which all sounded routine until I rang my obstetrician to organise a referral he seemed a bit alarmed and wanted to find out exactly what the technician had seen or not seen.

With hindsight, I’m so thankful that we had the obstetrician on our side and that he knew what questions to ask. He rang the practice and spoke to another specialist, who confirmed that she thought one side of the heart was too small and that the heart might be slightly too far in the centre of the chest.

That update came as we were sitting in the car, stuck in Sydney traffic on our way to a job interview for Gus (it was a big week – we were also preparing to finish at the Bible College where Gus and I had lived and studied, farewell friends and move house!).

At our obstetrician’s prompting our appointment to see the fetal cardiac specialist was bumped up to the next day.

We went to the hospital with a fair bit of trepidation, not helped by the 1.5 hour wait in the waiting room. She then repeated the morphology scan with a focus on the baby’s heart. And surprise surprise, the baby’s position wasn’t great for this appointment either!

After she completed the scan Gus and I sat side by side and she explained what was going on: the right hand side of our baby’s heart had not developed properly, and on the scale of harmless to fatal it’s condition was pretty serious.

Our baby would require medical intervention straight after birth, multiple open heart surgeries, and if they were successful it would it have a 60 – 70% survival rate to a reduced quality of life that would include no intense physical activity or contact sport.

As she spoke, Gus and I held hands tightly and I began to cry. This was definitely not what we’d expected when we walked into the ultrasound practice 24 hours before.

The next question was whether we would like to terminate the pregnancy given the serious nature of the baby’s condition. We needed to make a decision quickly she said, as there wasn’t much time before I passed the 20 week mark and decisions to end the pregnancy became much more complicated.

When we started trying to have a baby and then found out we were pregnant, I never imagined that we’d be asked so this question so directly.

While I cried some more, Gus answered the specialist that we both wanted to continue with the pregnancy despite the baby’s condition.

By her tone I think she felt that Gus was calling the shots himself and so she turned to me and asked me if I was sure that was my decision too. I nodded, as yes of course it was.

For a week or two leading up to the scan I’d been feeling the baby kick, the tiny punches distracting me no end in lectures and cementing my firm belief in the beauty of the life growing inside me, one that had been handcrafted by God, just as Psalm 139:13-14 says:

For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

The specialists’ response? “Are you very religious?” I answered quickly, “Um… we’re Christians” and we mentioned the study that Gus had just completed.

I’ve pondered this conversation many times since it occurred last November. I wonder what she would have said if we hadn’t had a particular religious affiliation? Would there have been less justification for our decision? Who knows.

It was hard not to feel vulnerable in that room, and that our personal beliefs and preferences were being challenged. Unfortunately it seems that our experience is not unique either – I know of others who’ve had similar conversations and also felt pressured.

But I am so thankful that Gus and I have a firm foundation from which to make our decisions – a trust in Christ Jesus built on the truth of the Bible that gives us hope despite life not going according to our plans. I can’t imagine the turmoil people must wrestle with if they are presented with the same choice we were and haven’t thought about it before.

We haven’t seen that specialist again in a professional capacity, but did run into her in a cafe on our visit to the Children’s Hospital. When we saw her then she said “Well you’ve decided to continue with the pregnancy…”, again suggesting she questioned our decision.

Since the first specialist, our decision to continue with the pregnancy hasn’t been challenged by any medical professionals we’ve met.

Our baby’s diagnosis has also changed slightly, after our care was transferred to a new obstetrician, cardiologist and care team at Westmead Children’s Hospital and more scans were done. The adjustment doesn’t make much of a difference to our understanding of the baby’s care plan, but it is a very slightly less complicated condition with a survival rate of 85%. I will explain more about it in a future post.

While I might not have chosen or planned our pregnancy to travel this road, I am so thankful to God for the child he has knit together within me, for the experiences we’ve had so far that have caused us to cling to him more closely, and for the journey he has prepared for us to walk.

The next verses of Psalm 139 remind me that they are not unknown to him:

My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.

Baby Cameron at 19 weeks - the best photo we've had all pregnancy.
Our baby at 19 weeks – the clearest photo we’ve had all pregnancy!