This is the story of our third child: my pregnancy with her, her arrival and her first few weeks. And I’m going to start at the end. Charlotte is now 6 weeks old. She is beautiful, and perfect and oh so loved. Her arrival has changed our family dynamics yet again, and yet she is a perfect fit for this family.
I’m writing our story down as a way for me to process what we have gone through and also to let our friends know what’s been going on. But mainly so that if another family find themselves in a similar situation, they can read our story and have hope that everything may be ok.
Part I: the pregnancy
We had always talked about 3 being the magic number for our family. For a while, we toyed with the idea of staying at two, probably somewhere in the never-ending sleepless nights that we had with Bailey.
With only 20 months between Alyssa and Bailey, I felt that we needed a bigger gap for my sanity’s sake. So once Bailey had turned 2 and Alyssa 4, we decided it was the right time. And yet again, we were blessed in falling pregnant first shot.
The first trimester passed slowly with constant nausea and exhaustion, but we hit 12 weeks and things sped up. All of a sudden, we were having our 19 week morphology scan. We took Alyssa, who was very excited to see the baby. Everything looked good to our eyes. We weren’t finding out the sex, we never have with any of our pregnancies and besides, we already had one of each, so this baby was a bonus either way.
And then the sonographer said the words that no one wants to hear: “I’m just going to get the doctor to take a look at one of the measurements.” In came the doctor, who had a second look, he told us that the nuchal fold measurement was larger than it should be. He then led us to a room to wait whilst he went to get an Obstetrician to come talk to us.
The obstetrician told us that the nuchal fold was around the 9mm mark, when it should be less than 6mm. And, within the nuchal fold was something called a cystic hygroma – a pouch of fluid from the lymphatic system. There were a few things it could be caused by and we were referred to a Maternal Fetal Medicine Obstetrician. But we couldn’t see her until Monday morning. It was Wednesday afternoon at this point.
We spent the weekend stunned and trying to stay away from Dr Google. Monday morning we met the lovely MFM doctor, who explained in more detail the three most likely causes of the cystic hygroma: it could have been due to an immature lymphatic system, which would most likely resolve in time; it could have been because of a chromosomal abnormality; or it could have been something called hydrops, which basically means fluid where it shouldn’t be. If it was hydrops, more fluid may have developed around other organs and parts of the body over time. If it was the chromosomal abnormality, the most likely culprits were a trisomy (of which Down Syndrome is one) or Turner’s Syndrome, but it could have been another abnormality. I suddenly went from having odds of 1 in 900 of the baby having Down Syndrome, to 1 in 57.
We discussed but declined the offer of an amniocentesis. We would not act on the results, and so felt it was not worth the risk to the baby, something our doctor fully supported us in. She arranged frequent monitoring, and extra scans. We had weekly appointments with her for the first few weeks, and by week 24, we had been given the all clear from an echo-cardiogram scan of the baby’s heart and another scan showed that the cystic hygroma seemed to be reducing in size. Everything was looking great, and with Christmas upon us, it was decided that we would not have our next scan and appointment until 28 weeks.
A couple of days before our appointment, I started to get a little bit worried. The baby’s movements didn’t feel right, and were quite reduced. As we had the appointment scheduled, I let the though sit at the back of my mind, and hoped that the scan would show that I was worrying about nothing.
Our 28 week appointment clashed with Bailey’s post-operative appointment with the ENT in the city, so we arranged for Dan to take Bailey to his appointment and Mum accompanied me to help with Alyssa. Both of them were really happy to see the baby on the screen, but I just had this feeling that something was off. I was heading in to see our obstetrician, and not wanting Alyssa to be present if it was bad news, I sent her and Mum to the duck pond to wait for me.
I sat down in the doctor’s office and she told me that she wanted to deliver my baby. The very next day. I was only 28 weeks and 4 days along. I knew that it wouldn’t be good. I burst into tears, and after a hug from my lovely doctor, she briefly explained why. The baby’s lungs were full of fluid. She sent me home to get Daniel and pack my bags and we arranged to meet her later that afternoon and she would go through everything.
But our baby must have a guardian angel or something watching over her, because whilst we were gone, the doctor decided to ring a colleague at the main birthing hospital in the city, who referred us to the head doctor in the maternal fetal medicine department over there. I got a phone call from our doctor telling us of a change of plan. This doctor was expecting us that afternoon to see if he could drain the fluid off whilst the baby was still inside me and hopefully buy us time to keep the baby in for longer.
We met the new obstetrician and he took us straight to an ultrasound room. He didn’t waste any time in taking a closer look at what was going on with the baby. He explained that the main reason our doctor at the first hospital wanted to deliver was due to a lack of blood flow back through the cord to the placenta caused by the pleural effusion (the fluid on her lung). The baby’s left lung was so full of fluid that her heart had been pushed way out of position, so the aorta and arteries at the top of the heart were being pushed out of line, which was pinching them, and the heart was having to work haps harder than it should be. At that stage, the blood flow around the body was ok, but she was showing signs of heart stress. He didn’t want to deliver – if we delivered, her lungs would not be able to inflate because of the fluid in the cavity and she would not be able to breath, and they would have trouble ventilating her until the fluid was drained. He felt that if we delivered at that moment in time, it wouldn’t have been a good outcome for our baby.
As scared and upset as we were, there really was no choice but to drain the fluid to try and save our baby. The procedure took less than 10 minutes and the relief on the baby’s heart was immediate. He removed 80ml of fluid from her left lung. He also suggested that he do an amnio whilst he was doing the procedure and we agreed: it was already invasive so we might as well try and find some answers to what had caused the build up of fluid.
I was admitted to the antenatal ward that night for the foreseeable future. I was given two doses of steroids overnight, to help mature the baby’s lungs, just in case we still needed to deliver.
Our new obstetrician arrived early the next morning to do another scan and see how things were looking. The bad news was the fluid had accumulated a lot quicker than the doctor would have liked. The good news was that the blood flow through the cord had improved. The doctor commented that she must be tough and was pretty resilient.
It was decided that rather than drain the fluid with a needle like the previous day, he would place a stent into the baby’s lung cavity to drain the fluid continuously into the amniotic sac, to prevent it building up again. The procedure had an even higher chance of causing me to go into pre-term labour or the baby to go into distress, so it was carried out in theatre, under sterile conditions and I was prepped ready for a caesarean, just in case they needed to put me under and get the baby out quickly. I was freaking out laying on the table, praying that the procedure would work. At the time, I was too scared to appreciate how amazing modern medicine is but I am so glad that in a situation like ours, they were able to do something to keep our baby baking and give her every chance for a more positive outcome.
They tested the fluid, and it was lympathetic fluid, and the pleural effusion was classed as a chylothorax. Her lympathetic system was immature and so not draining the fluid itself, and was causing it to build up in the lungs. The most likely cause of this was a chromosomal abnormality (gosh I hate that word) so we waited for the results of the amnio.
I spent another 6 days in hospital, as things with the baby stabilized and her blood flow through the cord returned to normal levels. I was scanned each day, and each day, I was grateful that we had gotten that little bit further with the pregnancy.
The day I was discharged, I chatted with our Obstetrician and he didn’t think there was any reason why I couldn’t have a natural birth or why, now she was stable, I couldn’t get to term. He told me that babies born at 32 weeks had excellent outcomes, and so that was my goal.
For the remainder of my pregnancy, we had weekly scans. I drove around with a bag packed in the back of the car, and each time we met with the doctor, I expected that to be the day he told us he wanted to deliver the baby. And each week, she was stable. There was no more sign of fluid and she was growing nicely.
By week 33, both the doctor and the sonographers were having difficulties finding the stent. But she was lying deep down on that side and so it was assumed to still be there as there was no reacculamtion of the fluid.
During week 34, we met with a neonatologist, who went through some likely scenarios. They were pretty certain we were in for a NICU stay, but it could be anything from weeks to months. Best case scenario was that the chylothorax would resolve in utero, worst case, they would have to put a more permanent drain in once she was born whilst they waited for it to clear. She would most likely need breathing support, which could be just through nasal prongs, but there was a possibility that she would need to be on a ventilator. We had already toured the NICU at 29 weeks, and had some idea of what to expect. Both the neonatologist and our obstetrician were very keen for her to stay put as long as possible, as it would mean less complications associated with prematurity.
At our scan in week 35, the sonographer finally found the stent – our little monkey had managed to pull it out and it was floating in the amniotic fluid, up near her face. But the good news was, no fluid was building up so our doctor was happy for us to continue with the pregnancy.
I began really thinking about birthing this baby. And I began to get worried that we wouldn’t be able to make the one hour drive to the hospital in time. As much as I didn’t want to, I began floating the idea of being induced.