Carolina and Olivia’s Journey
It was a miracle that Carolina fell pregnant. It was at the point of us deciding, “That was it” that God came through and she was pregnant. Carolina has polycystic kidney disease (PKD) which we found out in 2014, the year we were getting married. She called me with acute abdominal pain, which I thought were kidney stones. After coming home with ultrasounds and CT’s, I looked at the images and I almost went white. Her kidneys looked like sponges.
The diagnosis of PKD was given. After exploring it more and more, the determinant was that it was an autosomal dominant version of PKD. Even though there was no family history, which is normal of the autosomal dominant form of PKD, Carolina had somehow ended up with a spontaneous mutation. The news that there would be a high chance that our child could express the gene or at least carry it, was shattering but not outside of the realm of belief that God would protect our little one. So we got married and decided to plan for a child after a year.
Month after month, it seemed like we were getting nowhere. Her kidney function would decline regardless of how much we tried to eat well, exercise, pray and fast. It seemed like a futile endeavour. We desired to have a child but after months and months of trying and the constant kidney function decline, it pretty much came to the point where our nephrologist told us time was up.
We got to the point where we thought the promise God gave us for a child wasn’t going to look the way we thought it would look. We had received our words, we received prophetic word countless times and had such a strong belief that God would deliver on that which he said. When things weren’t going the way we thought they would, we thought through all the options of adoption, surrogacy and IVF and figured if this was the end then God must want our family to look different to what we had pictured.
At her August 2020 visit, our nephrologist verbalised that Carolina’s kidney function had improved since being at home during COVID, however, it was way too low for her body to conceive let alone carry a baby. 6 days later she called our nephrologist with the news she was pregnant!! It was honestly a miracle as her kidney function was down to 18%!
We got referred to another well known and seasoned nephrologist who specialised in dealing with pregnant women with kidney disease. While we knew the journey was going to be challenging, we didn’t understand how challenging it was going to be.
On his first visit, at 6wks pregnant, he gave us the reality of the journey ahead. His opinion was that Carolina would be at kidney failure at 10wks and have to be on dialysis throughout the pregnancy. He also said that chronic kidney disease patients generally deliver babies at 22-24wks without dialysis and if we dialyse early the best we could hope for was 30-32wks. He had only based it on what he had seen in his years of practice but didn’t expect what God was going to do.
We had weekly appointments with him throughout the pregnancy and it felt like we were on an emotional rollercoaster. Through the early weeks leading up to 12wks, all looked positive. He would think her kidneys would fail then her tests would improve. Very frustrating for him and very amusing for us. Little did he know, every week we would be praying and had an army praying with us. God was trying to show him something through Carolina.
At 13wks we had our first scan! We were super excited and talked about whether we were having a boy or a girl and like every soon to be parent placed our bets. We walked into the sonographers room and started the scan. Everything looked great and he gave us the running report of each part. “Do you want to know what you guys are having?” The answer was yes. “You’re having a girl. I’m 85% sure and I’ve only been wrong once” Pretty high odds.
As the scan continued he went back and forth with trying to get a good image of the baby’s heart. Eventually, he said, “I’m sorry guys but I can’t get a good view of her heart. It may seem like we have a problem. I’ll have to refer you to another sonographer who can get some clearer images. I’m sorry”
At that point, our hearts dropped. We thought, “God not another mountain”. We went away trying to stoke our faith and stay positive, and eventually, we chose it wasn’t worth worrying about it till we had a definite diagnosis. Plus, many sonographers get it wrong.
At 16wks Carolina went in to get a specialised cardiac scan. After what seemed like hours, she finally called and said the obstetricians were ready to chat with her. A conference call was set up. Me in the car waiting and Carolina is in a room with the obstetrician and cardiologist.
They then proceeded to tell us that Olivia had a rare congenital heart defect called tricuspid atresia. The outcome for a child that is born with it is that they have to have 3 surgeries to correct the heart defect. There are 3 groups. The first doesn’t make it past the first surgery, the 2nd makes it past the first but has serious complications such as strokes or a genetic disease that could see them with multi-organ defects that include a poorly developed immune system which meant a lifetime of constant worry and protection. The last group would make it through the surgeries and live a relatively normal life with ongoing monitoring.
The problem was that we needed Olivia to be born at a minimum of 37wks so that could operate. They would not do any cardiac surgery on a baby born sooner than that.
So were now met with a serious decision. Our nephrologist had said the best hope we have is 32wks. The surgeons say she has to be at least 37wks. The obstetrician made it painfully clear that this was not a pregnancy we should continue with as the odds are very poor that Olivia would be even born at a gestational age that would be viable for any intervention as the surgical team would not see her fit for intervention if she was too young and our only option would to be to “make her comfortable” while she passes away.
We drove home completely shattered and asking “God why?” “Why would you give us something that you would only have to take away? Why would you give us a child that would only challenge after challenge and likely not survive?” That was the longest drive home.
Each week the pressure to terminate the pregnancy grew and grew. Every week we felt like we were in a battle just to keep this baby and continue to believe that God would heal and a faithful to what he said. For 6wks we heard nothing but negative news from all sides. Yet at the same time, our nephrologist could not explain why Carolina’s bloods would not decline, even after everything he had seen in his career. Every week he was sure she was going to go into kidney failure and then be on dialysis but every week her bloods would stay stable. We would go into one appointment believing for the best but preparing for the worst and go into the next expecting to hear another round of bad news. At one point I had to tell the obstetrician that we were not making any decisions until we had the clearest picture of what we were seeing, so until then we are progressing on. Much to her frustration, she carried on and continued to the path.
At 20wks we had another cardiology scan and while we were going through the scan our spirits were high. Olivia was growing well and her growth was right on track. We were believing that God would heal her heart and that there would be a creative miracle we would see and that the medical team would see as well. While the scan was going the room slowly started filling with people. We thought, “Great, more people to see what God has done!” Turns out we were wrong. After the scan, our cardiologist had explained that Olivia had an additional congenital heart defect called total anomalous pulmonary vessel drainage (TAPVD). As if tricuspid atresia wasn’t rare enough (1-3%) of all congenital heart defects, she now had 2 rare defects which meant her case was super rare!
At this stage, the pushback from the obstetric team only heightened. Her advice was that Olivia had no way to breathe once she would be born. The vessels that connect her oxygenated blood from her lungs to the pumping chamber in her heart was not going to the right place. It was going to the vessel that had no outlet due to the right side of the heart being smaller and also has no connection to the pumping chamber that goes to the lungs. So basically she would be able to breathe outside of utero even if she was born in a healthy state, let alone acceptable gestational age for surgery, which was a very very low possibility. In essence, they said, you really should terminate as there isn’t any chance your baby will live and going through surgery to prepare you for dialysis for a baby that will not be viable was essentially a lost and futile exercise.
We chose to believe in God’s supernatural promise regardless of what the natural circumstances looked like.
Carolina ended up defying all odds and went into prep for dialysis at 21wks rather than the projected 10wks. Far longer than is normally ever seen in her pre-pregnancy kidney function let alone trajectory! On 7th January, a week before the final fistula superficialisation surgery, she got a call from the head of the obstetric team asking Carolina if she was ready to terminate as she had the room ready and all of the surgery could be avoided if she terminated then. We chose to trust God. Carolina said no and with a very frustrated and short end to the call, Carolina went in for her first surgery.
The first surgery happened on the 17th of November and was part 1 of a 2 part procedure. While the pain was intense, she pulled through with just local anaesthetic. Considering they were doing vascular surgery and connecting blood vessels in her arm while she was awake, she did so well.
The 2nd surgery was booked for 11 January 2021 and this time she went in under general anaesthetic. In she went and hours later I got a call from the surgeon. I was expecting to hear everything had gone well, but instead, the surgeon said Carolina had an anaphylactic reaction and was in ICU. She said the baby was fine and that she was recovering. Turns out looking at the medical notes, she had a grade 3 anaphoric reaction, which was 1 grade away from cardiac arrest. God had his hand over Carolina and Olivia regardless of how much the devil was trying. Because of her reaction, they weren’t able to complete the final superficialisation but instead put in the permacatheter so that she could start dialysis.
15 January 2021 was the rescheduled surgery to prep the fistula for dialysis. This time she went back to do it under local anaesthetic vs general for fear of the anaphylactic reaction. Just before the surgery one of the anaesthetists looked at the notes and basically realised that she had done the first surgery with nothing more than local skin anaesthetic vs a complete arm block so the nerves were blocked!! Absolute champion of a wife I have!
From that point our week looked like, weekly appointments at obstetrics and nephrology, 6xweek dialysis for 3.5hrs a day while Carolina was working full time (till 32wks). This was the norm for 16.5wks! Needless to say, we were frequent flyers at Royal Melbourne Hospital.
At 32wks everyone started getting nervous. Little did they know, we felt God had said 38wks to us early in the pregnancy. So while everyone else was nervous, we knew we were getting to 38wks. Each week went by the team was holding their breath that she would deliver. But God said 38wks so we were getting to 38wks. When we got to 35wks, the team decided to plan for induction. While nothing was stopping us getting to 38wks, they were putting in the plans in motion just in case we didn’t get a bed at the Children’s Hospital. While they were being over-cautious, we had complete peace knowing that God timing was perfect. At 36.5wks, we got the call for induction. We were a little shattered we didn’t get to 38wks but knowing that the whole team were confident we would and this was just a precautionary measure was a least a great consolation prize.
On the day of induction, we were well aware that when Olivia was to be delivered that the expectation was that she would be blue. While most babies are blue when born, she was expected to be much bluer due to the heart defect that made it difficult if not possible for her to breathe atmospheric air.
Induction happened, things went pear-shaped. The midwife ran the drip too quickly and stressed Olivia out and her heart rate climbed. Carolina was rushed into theatre for an emergency C-Section and before we knew it Olivia was out and I was in the room with her and Carolina was separated from her without anything more than a quick glance before she was taken away.
The first thing I saw was this little baby who was blue turn pink! Everything man had said was literally null and void when she turned pink. All the negative words spoken, bad news every week and every tear shed and prayer cried was all worth it in a moment. I cried like a baby!
Olivia was taken to the Children’s in an incubator. Not before a quick pitstop to see Carolina at Complex Care unit.
That was the 1st part of the journey but the story just begins.
Olivia was at the Children’s and Carolina was at the Women’s. I felt torn between my wife and my daughter. At least the walk between the 2 hospitals was long enough to clear my head.
In the first week, Carolina spent at the Women’s recovering. Turns out the C-Section had some complications and given her kidney condition, made it difficult for her body to bounce back as usual. She pushed herself to get to see Olivia. We pushed her in a wheelchair to see Olivia and wheeled her back to her prison at the Women’s. It was tough seeing her push herself to be with Olivia only to take 5 steps backwards. Her body was suffering, so much so that she ended up back on dialysis as a crisis measure to reduce her potassium so she wasn’t at risk of a heart attack. She did such a great job of being a mum from afar.
Olivia spent the first few days of life without really any physical touch that was other than clinical touch. While she was in ICU she was reliant on medication (prostin) to keep her heart valves open so she could breathe. When she moved to the ward, we finally had the opportunity to hold her properly without the fear of disconnecting a million cables. It was great to finally hold her and feel like parents.
On the 7th day of recovering, Olivia was booked for her first surgery. I remember when we got the call to sign the consent forms. We honestly didn’t expect it would be so soon. Given the report from our cardiologist, we had thought we’d have more time with her before she had to go in for surgery.
We had got hit with the news of surgery and other news which made us absolutely fall apart again. We felt like our lives were falling apart again. Just like the day when found out about Olivia’s condition.
We met the surgeon, signed the consent form and then went home to process. The next day we came in to hold Olivia and spend as much time as we could with her. In the natural, we knew there was a very high risk she would not come back the same as she left, if not at all. We prayed and went home to rest. It was strange that, for the first time, we felt the unsurpassable peace of God. In the midst of the natural and very real risk. Through to the feelings of every remanent of control you had over your child’s overcome being stripped away from you. The thing we struggled with the most was to let go of control and feeling like we had to pray for the miracle into being or call down fire from heaven, and let God take control.
To step away from the driver seat and let God steer is theoretically easy but practically the hardest thing we’ve ever had to do. To trust that the outcome has already been decided and that God gives or takes life on his timeline is comforting but also terrifying. As new parents, it’s such a difficult thing to stay grounded, trust him and be still.
We finally got a call from PICU and Olivia was out. The surgery went well and we thanked God countlessly. The message to the army that was praying for us went out and I think countless people sighed a massive breath of relief when they read it.
We spent the next 2 days going into the hospital and visiting her. But on Wednesday night, Carolina had trouble breathing. Overnight she felt like someone was sitting on her chest. We went to ED the next morning, only to find her body had retained so much water that her lungs were getting saturated she couldn’t breathe.
She would go on to spend another 5 days between 2 hospitals that didn’t know what to do with her. Turns out she had developed postpartum pre-eclampsia, which is life-threatening if not carefully monitored. Her kidney function had taken a massive hit. From being an absolute outlier of a case for our nephrologist to having to face going back onto dialysis and waiting on the transplant list for a new kidney, was a very very hard fact to face. On the one hand, you saw God’s hand move miraculously to get Carolina and Olivia to this point, which no one thought was possible, to then be faced with another massive decision to trust that God will never fail and will perform another miracle is a huge challenge to your faith.
Faith is challenging. You’re choosing to believe in a theoretical possibility or in our case impossibility, with no assurance what outcome will be. You just have a word and a command to trust. It’s scary and to the natural world, moronic. But God is a God that sees the beginning from the end. Meaning he’s already got the outcome planned, we’re just on the journey of walking the designated path with blind and steadfast assurance he will guide the next step.
When Carolina finally came out of hospital we went to see Olivia and stayed there as long as we could. We listened to the words of the staff and doctors and took their advice to rest. While we wanted nothing more than to be with Olivia, we had to ensure we could be strong to hold her up. Much like an Aaron, Moses situation. We then spent the next 4wks in hospital.
Olivia spent 2.5wks in ICU. Her path was super rocky and her recovery was littered with setbacks. She had developed a bowel infection while in ICU which meant countless antibiotics to try to clear it out. She developed chylothorax, which is a lung infection from gastric juices. This meant she retained fluid and as the days when by, she switched between being swollen to looking depleted. But God was good. Every day we went in, she made attempts to wake up when heard our voice. The nurses commented that she would fight off the morphine and wake herself up when we were there and after we left. It was heartbreaking having to come and go. But we knew God has given her the strength and will to live that we would never understand. She was already a tough little one and a determined one to live. Eventually, she made it onto the ward where we could spend a lot more time with her. But while she was improving her O2 saturations started fluctuating and dipping. Turns out she developed an infection from the IV line and as a result, spent 10days on heavy antibiotics to help fight off the infection. By the end of her 5wk stay in the hospital, Olivia had gained a grand total of 100gm putting on her weight not even on the scale. But we knew she would be fine and God was faithful to his word.
Each week that went by, Olivia got stronger and started showing a little personality. She fed well, was right on her milestones considering her first 5wks of life was so rough. So many people comment that you wouldn’t tell she is a cardiac baby. While we don’t know what cardiac babies are supposed to look like, we can only take that as a compliment to the faithfulness and goodness of God.
The journey is challenging, faith-building, capacity stretching, full of joy and rewarding. We’re continuing to see God’s hand over both Carolina and Olivia.
Carolina continues to stay stable with her kidney function and is now starting to improve again.
Olivia has shown such a little personality and peace in the midst of all the poking and prodding.
On 23rd July Olivia had an MRI to visualise her heart, blood vessels and shunt. When she gets to 5kg, the cardiologist expects the shunt to fail. The amazing thing, and only now we understand what God was doing at her 20wk scan, is Olivia’s heart has an offshoot from her Aorta that provides a blood supply to the lungs. In actual fact, it’s so key that in most children, they have to monitor very closely to pick when the shunt will fail, because if it does, the child may decline very quickly and can die within hours in cases. In her case, if the shunt fails, she will still have blood flow to her lungs!!! How good is god! He designed her with a backup blood supply!
With the MRI they had confirmed the pulmonary vessels were still small and narrowed. They were unsure of the next step, as if they proceeded with the plan to correct the blood vessel flow and create the “GLEN” the blood vessels may tear and the “GLEN” will fail. So the cardiologist had to talk to the surgeons to figure out what the next step will be.
After talking to the team, they decided to do a CT under general anaesthetic again. After seeing how long it took for her to recover from the last GA, we had major concerns about how many GA’s she was having given how tiny she is. Now an MRI is a golden standard for imaging. The fact that Olivia went under general anaesthetic with a full anaesthetic team and imaging team and they still didn’t see change with the blood vessels, means that something doesn’t add up. Generally, when we see this, we know God is up to something. So we decided as a family to do a 3day prayer and fast for God to heal and have his hand over Olivia.
2days in they call us to ask us to go in so they can try the CT by giving her a bottle rather than GA. We go in, she gets it done. Wide awake and just quiet! Absolute trooper this kid is!
We get a call from the cardiologist 2 days later saying, “Olivia’s pulmonary vessels are normal, we are able to proceed as per our plan and don’t have to replace the shunt” PRAISE GOD! Talk about a creative miracle! In all the scans we’ve ever done, they’ve always commented that these vessels have always been narrowed. Is it a coincidence that her vessels grow after prayer and fasting? NOPE!
God is good and he’s still performing creative miracles!
At this stage, we look back on the journey that has been and have a few insights on the character of God.
- He is sovereign. He knows all things and is above everything we experience in our humanity.
- He is gracious. When we doubt him or his plan, he still takes us by the hand and shows us a little more of the puzzle to give us confidence. Even when we doubt his presence, he is still gracious to be patient with us and remind us of his promise in many ways.
- He is in control. While we struggle with letting go of the steering wheel, he’s a far better driver and sees everything on the road before we will.
- He is supernatural. Miracles are in the small and big. But they are real and we see them if we trust and ask.
- He is a father. I now know the meaning of God being a father. He loves us so much that he covers us when we are weak, lifts us up when we are fatigued and done, encourages us when we are on the mountain top, loves us unconditionally to give us good gifts even though the journey is long.
The journey of our family is a testament to the nature and qualities of God. While the chapters in the story have already been miraculous, we’re looking forward to the upcoming chapters and how he uses this story to reflect his power and nature.