Fetal Tachycardia - Long QT Syndrome?

[ElisMummy]

My son Eli died 12 weeks ago.  I had a normal, healthy pregnancy until my routine 28 weeks check where my midwife found Eli's heartrate was high (220bpm).  I was sent to hospital for monitoring, it was still 220 so then I had to wait a couple of hours for a scan.  During the scan Eli's heart rate dropped to 70bpm so he was delivered immediately.  When he was born his heartrate was 40bpm.  The doctors were able to stabilise him enough to move to a specialist hospital but his heart remained high and despite the very best efforts (and every drug imaginable) his heart failed 26 hours after delivery.
We have had a post mortem which was inconclusive.  His heart was structurally fine and there was no sign of infection etc so they are currently doing gene tests specifically for Long QT Syndrome.  Although they haven't taken blood from my husband and I, we are being sent for an ECG and they have taken a detailed family history.
My main concern at the moment is for our other three children.  They all seem healthy - what are the chances that this is genetic and if it is what are we dealing with?

[ElisMummy]

Thank you so much for you replies.  It is reassuring to know that if we do have lqts it is treatable and not the end of the world.  It just seems strange to me that they are testing my husband and me before getting the gene test results from my son - almost as if they expect to find it.

[stevie_wonder]

I'm so sorry about the loss of your baby son.
I have Long QT Syndrome and had a similar thing happen to my baby. I was pregnant with twins and around 20 weeks they noticed that one baby's heart rate was much lower and that she was slightly smaller. As the pregnancy progressed her heart rate would fluctuate and her growth was extremely slow and I delivered them at 31 weeks. She died shortly after she was born and my other daughter was perfectly healthy (or so we thought). There was no reason given for this at the time but many years later our LQTS was diagnosed and the pediatric electrophysiologist that my children saw said that since my daughter had LQTS and she was an identical twin that this was probably the cause of my baby's death.
Your other children should be seen by an Electrophysiologist too as well as you and your husband. You can contact SADS (www.sads.org) to find a doctor near you who is experienced in LQTS.
I know you must be terribly worried but once diagnosed and treated LQTS patients lead normal and healthy lives.
Please don't worry too much but do look into this soon.
Take care,

[Pamz]

I am so sorry for your loss! I have lost a brother and almost a son to short qt and I know how hard that is to deal with.  I have read about long qt on infants and inutero.  I don't know a lot about long qt but I believe most long qt's (there is several different types) show up on the ecg.  If the genetic test shows positive for long qt on Eli, you can each be tested for that genetic defect even if it doesn't show up on the ecg because some people are borderline.   I'd suspect that they seen long qt on Eli's ecg while he was still here to suspect that.  Some types of long qt are treated with medication and others with an icd.  There is a website for Sudden Arrythmia Death Syndromes - the sads.org.  It points out places to read up a lot about the different sydromes and also about dealing with the loss.  I hope it can help you.  

Again, my condolences for the loss of your son.