Luke’s Story of misdiagnosis

Luke’s Story of misdiagnosis
Describe your situation at the time of your pregnancy and your child’s diagnosis.
I was 13 weeks pregnant on the 14th of December 2009 and it was my first scan of the pregnancy. My doctor performed the scan and noticed a calcium deposit in the baby’s heart. She told us she would book us in for another scan in a few weeks to see how things were with the baby and to observe the deposit in the heart further.We were called back 6 weeks later on the 4th of February 2010 . I was 20 weeks  pregnant at this stage. A different person performed the scan this time and she told us the calcium deposit was still there and that because of it there was an increased chance of Down’s Syndrome. She adjusted our risk for Down’s Syndrome to 1 in 500 and mentioned the risk gets higher with complications. I asked if anything could be done about the deposit in the heart like an operation but she said nothing can be done just wait and see. We were also told at this point that an amniocentesis test for Down’s Syndrome would have helped us know if our baby had the condition for sure or not. We had turned down that test earlier and were now too late for it but that it could be done towards the end of the pregnancy if we liked. We weren’t bothered about getting it done as we knew we were going to accept our baby whatever happened. I can’t fully remember if they recommended an MRI at this stage for the heart or if the MRI was for assessing the brain after fluid was noticed on our baby’s brain.

Outside of the hospital scans we decided to go for a 4D scan in a private hospital to record the baby in the womb as a little momento. We had done this with our first little girl and loved it because you get to see the baby moving in the womb and see what it looks like. At this point we had already found out our baby was a boy and were nearly fully decided on calling him Luke. We had our 4D scan at 26 weeks on the 19th of March 2010  and during it the doctor performing the scan noticed fluid on the baby’s brain. It was 13 and should be between 0 and 10. She advised us to tell our original doctor at the next scan and report back to her as she wanted to know how things went for us.
At our next scan on the 22nd of April 2010, I was 31 weeks pregnant and the fluid had gone down to 11. Our doctor was performing the scan and believed the because the fluid had gone down to nearly normal levels there was nothing to worry about there but that she had spotted something wrong with the heart. She said the valves in the heart were floppy in structure and had us referred to a heart specialist. We also had an MRI done that same day in a children’s hospital which I believe was to assess the fluid on the brain further. The results of  the MRI confirmed that everything was fine with the fluid on the brain.

I can’t remember the date of our next scan but it was close to the end of the pregnancy and it was with a heart specialist . At this scan the doctor decided the flow gradient of blood from one section of heart to another was unusual and needed to be assessed some more when the baby was born. I had been planning a home birth but the doctor strongly advised us against this in this situation. He mentioned that if there was something wrong with the baby complications might arise when the baby was born e.g. the baby may need to be revived.
When Luke was born on the 24th of June 2010 he was confirmed as perfectly healthy by the midwife. Then the next week we went for his heart assessment. The doctor performed the assessment with an echocardiogram and he confirmed Luke’s heart to be in perfect working order. Over the next few months we were called back to the hospital 3 times for follow up assessments due to all the concerns during the pregnancy. There was also another scan for a suspected dislocated hip and a follow up scan that confirmed the hip had grown perfectly and whatever was there was now gone. The final assessment was performed by a top doctor from in the hospital. She apologised for not having seen me during my pregnancy or after the birth as the hospital was so busy it just wasn’t possible. She had studied all the notes on Luke and assessed Luke again herself and finally said we can’t find anything wrong but that if you notice any learning difficulties later on these things that have been observed during your pregnancy would probably be the reason. At that stage I felt like saying “you know what, God is good and he has gotten us safely through all of this. He’s not going to stop looking after us now”.

What advice were you given at the time?
I asked what could be done, as in, was there an in the womb operation to help our baby but they said no. There was nothing could be done, just wait and see what happens.

What were your emotions at the time? Did your emotions or attitude change once the baby was born or over time?
We were very concerned and cried a bit. But we were trying to stay positive, believing that everything would work out well. Over time, with each verdict, we were getting more concerned and finding it hard to believe everything was going to be ok with our baby. Once our baby was born we knew everything was fine and we were so relieved.

Where did you find help / information?
We looked it up on the internet and realised that all these indicators were pointing towards Down’s Syndrome.
Given the choice again do you think you would choose abortion? Why/ Why not?
No because one way or another he was our baby and we were going to accept him as he was. That’s why we choose not to have the amniocentesis test before all the concerns were highlighted.

What would you say to parents out there who have been given a similar diagnosis for their baby?
Give it time because you grow attached to the baby in your womb over time no matter what the outcome.
Was there anybody or anything in particular that helped you at the time?
We had lots of friends pray for us and with us for our baby and that really helped.




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