WHEN THINGS DON'T GO AS PLANNED
My husband and I always knew we wanted to have our babies close together. We talked about trying just after our daughters 1st birthday. However me in my ever so negative ways thought it would take much longer to get pregnant a second time because that's what everyone said. We were lucky enough to get pregnant after our first try with our daughter. So when my period returned we started trying again and after 3 months I was pregnant again, a month before our daughters 1st birthday. After suffering with hyperemesis gravidarum with my daughter, I was terrified I wouldn't be able to give her the birthday party I had been planning since she was born. Luckily I powered through the day.
The morning sickness was bad but I was taking the zofran (ondansetron, a medication given to chemotherapy patients for nausea) and coping. The weeks ticked by and everything seemed normal. We had the harmony test done at 11 weeks and found out we were having a boy. We had a little hiccup with spotting at 15 weeks, having never bled with my daughter I freaked out and off to hospital we went. We eventually got to see his heartbeat on an ultrasound and we went back home.
Everything seemed normal, I started to feel the little flutters that eventually turned into more substantial kicks. It was time to see our baby boy at his 20 week scan. Going into my daughters scan having not done the harmony test with her I was terrified something would be wrong but this time I wasn't worried at all the harmony test had come back clear we were just here to see our baby.
The technician was so quick checking everything and taking pictures for us. However when it came to the heart he spent a good 10-15 minutes looking at it, he had me roll onto both sides and gave my tummy a jiggle to get bubs to move, I just thought he couldn't get a clear view. At the end of those 15 minutes he said, "I think there's something wrong with bubs heart." I didn't react immediately I was in shock. He said he could be wrong and he was going to check with the doctor. He suspected that his heart valves were around the wrong way. As soon as we got out to the waiting room I burst into tears. This was Monday.
After waiting for a while and crying the whole time I got a call from the hospital saying a doctor wanted to see me. So once we got our pictures we walked across to the hospital. We went up to the Maternal Assessment Centre and I had managed to slightly calm myself down as my husband made calls to our parents to let them know what was going on. The doctors referred me to a gene counsellor and said I should hear from them by the end of the day. The gene counsellor called that afternoon and told me she had organised an ultrasound at the Mercy Women's Hospital with an obstetrician for Wednesday so they could confirm what or if there was a problem and that I would be at the Mercy Hospital for the remainder of my pregnancy.
Wednesday afternoon and anxiety was high, we had a normal technician do an ultrasound just to check over bubs again and then the obstetrician came in to look at his heart. They confirmed that he has TGA (Transposition of the Great Arteries). We then saw another obstetrician who talked us through what would happen from now on. I was told I should still be able to have a natural delivery which was a relief, I would be able to get out of hospital ASAP and still be able to look after my daughter. We then saw a genetic counsellor and she spoke about his defect and told us that it's not associated with any other defects so it's not like he has this so he probably also has this. I was offered an amniocentesis which I declined to have because for me personally it was too late to terminate so there was no point taking the 1 in 200 chance of spontaneous miscarriage when he had already won the 1 in 2000 chance of getting this defect. After the appointments I made the usual phone calls to family and friends, I was remaining upbeat and positive, I was confident the doctors had everything under control and that my baby would get through this and be fine.
Friday, my husband had just taken our daughter out so I could have a relaxing bath, shave my legs for the first time in god knows how long and put on some fake tan to take the edge off my pale skin for our friends engagement party the next night. I made sure the water wasn't too hot and I had my bath. As soon as I got out I felt a gush and then saw bright red blood running down my leg. I quickly grabbed a towel and shoved it between my legs and called my husband. My first thought was that I was going to lose him and I quickly fell into hysterics. My husband called an ambulance and turned around to come back home, I called my mum and she began the hour and 45 minute journey from her home to the hospital. I got myself dried off and dressed, put a pad in and just cried. Someone from the ambulance service called to tell me they were on their way and then started to talk me through what I needed to do if I had to deliver him by myself, she told me to get towels and get into position on the bed. I told her through tears that I wasn't having contractions and I was only 20 weeks, she said legally she had to tell me what to do, wasn't really helping my anxiety levels though.
By the time the ambo's arrived the bleeding had stopped and not long after my husband arrived back home. They checked my heart rate and blood pressure and took me off to hospital. My husband waited for his parents to come get our daughter and then headed off to meet me at the hospital. Once I got in the ambulance I felt some kicks which were extremely reassuring. As soon as I got to the hospital I got to hear his heartbeat and it was nice and strong, they went to chase up my ultrasound results from Wednesday to check the position of the placenta to make sure that wasn't causing the bleeding. After an examination the doctors couldn't conclusively determine what caused the bleeding, I had a blood test as I am a negative blood group and they had to check that my blood hadn't mixed with his otherwise I would need a shot of anti-D. They gave me the option of hanging around for 3 hours and waiting for the results or going home and they'd call me if I needed to come back. So we went home, we decided to leave our daughter with my mother in law for the night so we could just decompress and try relax. Safe to say, I never managed to fake tan.
The next evening was our friends engagement party, we decided we would make an appearance with everyone saying we should try go out and enjoy ourselves. We both were feeling flat and defeated by the week but tried to push through it. We caught up with friends and were making it through the night. My leakage paranoia was next level so I was constantly going to the toilet to make sure I wasn't bleeding again. It all fell apart when a couple with a small baby boy arrived. Thinking about the battle ahead for my boy, and that when my boy is that old he will most likely still be in hospital. I burst into tears and got out of there as quickly as possible and threw up in the car park. After gaining some composure we went back inside and said goodbye to everyone.
2 weeks passed and we were back at the hospital to see the cardiologist for an ultrasound so he could look at his heart. This time the cardiologist also found a small hole in his heart. This was neither a good thing or a bad thing, the hole was small so he said it would likely close by itself before birth, if it was bigger it could have possibly helped the blood mix before surgery. After the ultrasound he sat us down and explained what would happen once bubs was born. He showed us a very good diagram of how the heart should work and whats happening with our babies heart. Basically instead of the blood going out the lungs back to the heart and then taking that oxygenated blood out to body. His arteries are just looping, pumping blood from the heart to the lungs in a loop and the other artery is pumping blood from the heart to the body in a loop. So once hes born they need to ensure that his blood can mix in the heart so some oxygenated blood makes it around the body until they can do and arterial switch and swap the arteries around so they are where they should be.
There are a few ways they can get the blood to mix, one is to administer medication that will keep a duct between the two arteries open that will allow blood to mix however this option is deemed unstable. The other is to place a catheter in the main artery in his leg that will carry a small balloon to the heart that they then inflate to keep a small hole that normally closes after birth open to allow the blood to mix that way. If either of these work, it can be 3-4 days or even up to 10 days before he will be transferred to the Royal Children's hospital for the arterial switch operation. In this time depending on how he is coping with breathing I may be able to establish breastfeeding before his operation otherwise they can give him my breast milk through a feeding tube. There's a lot of uncertainty as it all depends on what works and when surgeons are available to perform the surgery. We wouldn't be seeing the cardiologist for another 6 weeks when he would look at his heart again.
6 weeks passed I had a couple of obstetrician appointments in that time, everything else with the pregnancy was tracking normally although he is measuring a week or so ahead and my tummy is measuring 6 weeks ahead because I have so much fluid, the only abnormality was his heart. We had a big day at the hospital, we had appointments with the paediatric unit, obstetrician, midwife for my whooping cough and anti d shots and the cardiologist. The paediatrician spoke to us about what would happen once he was born, that if I go into spontaneous labour to call ahead and there would be a team waiting for me and waiting for him. In the case of his treatment, he said it all depends on how bubs is doing once he's born, how he's breathing and what time he arrives and who is available. If the cardiologist isn't there he will be administered the medication, if that works well enough he may never need to have the balloon. It was all pretty much information we had heard before, he said timing of surgery also depends on transport being available and surgeons and beds being available at the Children's. If he has the balloon that is deemed as a stable condition and therefor may be pushed down the list. As he said it all depends on what condition he is in when he's born.
Next up was the obstetrician, this was just a quick check up, the usual taking the blood pressure and get blood test results. Thankfully I passed my glucose test, my thyroid levels were still good and my iron was low but not low enough for a transfusion. Then off to the midwife for my injections and to sign consent forms for bubs to get the Vitamin K and Hepatitis B injections once he was born.
Once that was done the cardiologist was ready for us. He did another ultrasound with an obstetrician and looked at the heart and this time couldn't see the small hole that they saw last time. They checked blood flow to the liver and the brain and everything else was fine, just the TGA. The obstetrician did a general check over of bubs and took some measurements. He's measuring a week and a half ahead which he has been since 20 weeks. After the scan we sat and spoke to the cardiologist. Again, mostly things we had already been told, he seems to think that if after 37 weeks it's a good time to deliver with bed in NICU (Neonatal Intensive Care Unit) available I will most likely be induced, so bubs extra size will be an advantage. He said its unlikely we will see him again until bubs is born.
So that's it so far. My next obstetrician appointment is in the new year. No more bad news but it's still a shit situation. Half the battle is knowing before birth but it also fills me with more anxiety than usual anticipating the birth. I take comfort in knowing he's safe inside so I'm conflicted between wanting to keep him safe inside my tummy and wanting it to all be over and to have him home. It makes it hard to enjoy the pregnancy and even be excited about him being here because there are so many unknowns, so many different scenarios that could unfold. When we first found out I was trying to be strong as my husband was struggling with it all and as time has gone on he has gotten better and it's wearing me down and the anxiety is growing. I am so filled with fear. It's every parents worst nightmare that something will happen to their child that they can't fix and that love alone isn't enough. I am thankful that we have one of the best children's hospitals in the world, I am thankful we have free healthcare in this country, I am thankful for our friends and family who have been so supportive, I am thankful my daughter is so happy and healthy and I am thankful for my husband, I couldn't imagine facing this battle with anyone else by my side.
Help make a difference and donate here.
The morning sickness was bad but I was taking the zofran (ondansetron, a medication given to chemotherapy patients for nausea) and coping. The weeks ticked by and everything seemed normal. We had the harmony test done at 11 weeks and found out we were having a boy. We had a little hiccup with spotting at 15 weeks, having never bled with my daughter I freaked out and off to hospital we went. We eventually got to see his heartbeat on an ultrasound and we went back home.
Everything seemed normal, I started to feel the little flutters that eventually turned into more substantial kicks. It was time to see our baby boy at his 20 week scan. Going into my daughters scan having not done the harmony test with her I was terrified something would be wrong but this time I wasn't worried at all the harmony test had come back clear we were just here to see our baby.
The technician was so quick checking everything and taking pictures for us. However when it came to the heart he spent a good 10-15 minutes looking at it, he had me roll onto both sides and gave my tummy a jiggle to get bubs to move, I just thought he couldn't get a clear view. At the end of those 15 minutes he said, "I think there's something wrong with bubs heart." I didn't react immediately I was in shock. He said he could be wrong and he was going to check with the doctor. He suspected that his heart valves were around the wrong way. As soon as we got out to the waiting room I burst into tears. This was Monday.
After waiting for a while and crying the whole time I got a call from the hospital saying a doctor wanted to see me. So once we got our pictures we walked across to the hospital. We went up to the Maternal Assessment Centre and I had managed to slightly calm myself down as my husband made calls to our parents to let them know what was going on. The doctors referred me to a gene counsellor and said I should hear from them by the end of the day. The gene counsellor called that afternoon and told me she had organised an ultrasound at the Mercy Women's Hospital with an obstetrician for Wednesday so they could confirm what or if there was a problem and that I would be at the Mercy Hospital for the remainder of my pregnancy.
Wednesday afternoon and anxiety was high, we had a normal technician do an ultrasound just to check over bubs again and then the obstetrician came in to look at his heart. They confirmed that he has TGA (Transposition of the Great Arteries). We then saw another obstetrician who talked us through what would happen from now on. I was told I should still be able to have a natural delivery which was a relief, I would be able to get out of hospital ASAP and still be able to look after my daughter. We then saw a genetic counsellor and she spoke about his defect and told us that it's not associated with any other defects so it's not like he has this so he probably also has this. I was offered an amniocentesis which I declined to have because for me personally it was too late to terminate so there was no point taking the 1 in 200 chance of spontaneous miscarriage when he had already won the 1 in 2000 chance of getting this defect. After the appointments I made the usual phone calls to family and friends, I was remaining upbeat and positive, I was confident the doctors had everything under control and that my baby would get through this and be fine.Friday, my husband had just taken our daughter out so I could have a relaxing bath, shave my legs for the first time in god knows how long and put on some fake tan to take the edge off my pale skin for our friends engagement party the next night. I made sure the water wasn't too hot and I had my bath. As soon as I got out I felt a gush and then saw bright red blood running down my leg. I quickly grabbed a towel and shoved it between my legs and called my husband. My first thought was that I was going to lose him and I quickly fell into hysterics. My husband called an ambulance and turned around to come back home, I called my mum and she began the hour and 45 minute journey from her home to the hospital. I got myself dried off and dressed, put a pad in and just cried. Someone from the ambulance service called to tell me they were on their way and then started to talk me through what I needed to do if I had to deliver him by myself, she told me to get towels and get into position on the bed. I told her through tears that I wasn't having contractions and I was only 20 weeks, she said legally she had to tell me what to do, wasn't really helping my anxiety levels though.
By the time the ambo's arrived the bleeding had stopped and not long after my husband arrived back home. They checked my heart rate and blood pressure and took me off to hospital. My husband waited for his parents to come get our daughter and then headed off to meet me at the hospital. Once I got in the ambulance I felt some kicks which were extremely reassuring. As soon as I got to the hospital I got to hear his heartbeat and it was nice and strong, they went to chase up my ultrasound results from Wednesday to check the position of the placenta to make sure that wasn't causing the bleeding. After an examination the doctors couldn't conclusively determine what caused the bleeding, I had a blood test as I am a negative blood group and they had to check that my blood hadn't mixed with his otherwise I would need a shot of anti-D. They gave me the option of hanging around for 3 hours and waiting for the results or going home and they'd call me if I needed to come back. So we went home, we decided to leave our daughter with my mother in law for the night so we could just decompress and try relax. Safe to say, I never managed to fake tan.
The next evening was our friends engagement party, we decided we would make an appearance with everyone saying we should try go out and enjoy ourselves. We both were feeling flat and defeated by the week but tried to push through it. We caught up with friends and were making it through the night. My leakage paranoia was next level so I was constantly going to the toilet to make sure I wasn't bleeding again. It all fell apart when a couple with a small baby boy arrived. Thinking about the battle ahead for my boy, and that when my boy is that old he will most likely still be in hospital. I burst into tears and got out of there as quickly as possible and threw up in the car park. After gaining some composure we went back inside and said goodbye to everyone.
2 weeks passed and we were back at the hospital to see the cardiologist for an ultrasound so he could look at his heart. This time the cardiologist also found a small hole in his heart. This was neither a good thing or a bad thing, the hole was small so he said it would likely close by itself before birth, if it was bigger it could have possibly helped the blood mix before surgery. After the ultrasound he sat us down and explained what would happen once bubs was born. He showed us a very good diagram of how the heart should work and whats happening with our babies heart. Basically instead of the blood going out the lungs back to the heart and then taking that oxygenated blood out to body. His arteries are just looping, pumping blood from the heart to the lungs in a loop and the other artery is pumping blood from the heart to the body in a loop. So once hes born they need to ensure that his blood can mix in the heart so some oxygenated blood makes it around the body until they can do and arterial switch and swap the arteries around so they are where they should be.There are a few ways they can get the blood to mix, one is to administer medication that will keep a duct between the two arteries open that will allow blood to mix however this option is deemed unstable. The other is to place a catheter in the main artery in his leg that will carry a small balloon to the heart that they then inflate to keep a small hole that normally closes after birth open to allow the blood to mix that way. If either of these work, it can be 3-4 days or even up to 10 days before he will be transferred to the Royal Children's hospital for the arterial switch operation. In this time depending on how he is coping with breathing I may be able to establish breastfeeding before his operation otherwise they can give him my breast milk through a feeding tube. There's a lot of uncertainty as it all depends on what works and when surgeons are available to perform the surgery. We wouldn't be seeing the cardiologist for another 6 weeks when he would look at his heart again.
6 weeks passed I had a couple of obstetrician appointments in that time, everything else with the pregnancy was tracking normally although he is measuring a week or so ahead and my tummy is measuring 6 weeks ahead because I have so much fluid, the only abnormality was his heart. We had a big day at the hospital, we had appointments with the paediatric unit, obstetrician, midwife for my whooping cough and anti d shots and the cardiologist. The paediatrician spoke to us about what would happen once he was born, that if I go into spontaneous labour to call ahead and there would be a team waiting for me and waiting for him. In the case of his treatment, he said it all depends on how bubs is doing once he's born, how he's breathing and what time he arrives and who is available. If the cardiologist isn't there he will be administered the medication, if that works well enough he may never need to have the balloon. It was all pretty much information we had heard before, he said timing of surgery also depends on transport being available and surgeons and beds being available at the Children's. If he has the balloon that is deemed as a stable condition and therefor may be pushed down the list. As he said it all depends on what condition he is in when he's born.
Next up was the obstetrician, this was just a quick check up, the usual taking the blood pressure and get blood test results. Thankfully I passed my glucose test, my thyroid levels were still good and my iron was low but not low enough for a transfusion. Then off to the midwife for my injections and to sign consent forms for bubs to get the Vitamin K and Hepatitis B injections once he was born.
Once that was done the cardiologist was ready for us. He did another ultrasound with an obstetrician and looked at the heart and this time couldn't see the small hole that they saw last time. They checked blood flow to the liver and the brain and everything else was fine, just the TGA. The obstetrician did a general check over of bubs and took some measurements. He's measuring a week and a half ahead which he has been since 20 weeks. After the scan we sat and spoke to the cardiologist. Again, mostly things we had already been told, he seems to think that if after 37 weeks it's a good time to deliver with bed in NICU (Neonatal Intensive Care Unit) available I will most likely be induced, so bubs extra size will be an advantage. He said its unlikely we will see him again until bubs is born.
So that's it so far. My next obstetrician appointment is in the new year. No more bad news but it's still a shit situation. Half the battle is knowing before birth but it also fills me with more anxiety than usual anticipating the birth. I take comfort in knowing he's safe inside so I'm conflicted between wanting to keep him safe inside my tummy and wanting it to all be over and to have him home. It makes it hard to enjoy the pregnancy and even be excited about him being here because there are so many unknowns, so many different scenarios that could unfold. When we first found out I was trying to be strong as my husband was struggling with it all and as time has gone on he has gotten better and it's wearing me down and the anxiety is growing. I am so filled with fear. It's every parents worst nightmare that something will happen to their child that they can't fix and that love alone isn't enough. I am thankful that we have one of the best children's hospitals in the world, I am thankful we have free healthcare in this country, I am thankful for our friends and family who have been so supportive, I am thankful my daughter is so happy and healthy and I am thankful for my husband, I couldn't imagine facing this battle with anyone else by my side.
Help make a difference and donate here.
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