"In all their distress, He too, was distressed and the Angel of His presence saved them; He lifted them up and carried them..." Isaiah 63:9
We have received so much information about Elysha's condition over the past few days that our heads are swimming.
On Monday we spent the day at Mount Sinai Hospital in Toronto. We had a 2 hour ultrasound and did receive the good news while we were there that almost everything about her is normal.
Following the scan, the doctors consulted together, did another ultrasound then sat down with us. They gave us a preliminary diagnosis but defered to the paediatric cardiologist we were then booked to see at Sick Kids Hospital the next day (Tuesday). We were also refered to the High Risk Pregnancy clinic because in addition to the heart issue, there are issues with the uterine artery which is preventing enough nutrition and blood flow reaching the baby. It is not as much of a problem now as it will be during the third trimester when she needs to put on weight.
Tuesday: Sick Kids Hospital for a fetal echocardiogram. It's basically a specialized ultrasound. This one was also almost 2 hours in total, after a brief break while the cardiologist took a look at the slides. We then had to wait while the doctor reviewed the data and (unknown to us at the time) consulted with collegues.
We then had a 35 minute consult. It is actually worse than what we were initially told at Mount Sinai. Here is what we were told.
1) Dextrocardia-the apex (tip of the heart) is pointing to the right as well as the heart itself being over to the right. So the heart is reversed.
2)The pulmonary artery is narrowed and may continue to narrow
3)The right and left atriums (the top "filling" chambers) are in the correct place (for her reversed heart) but the left ventricle is on the right and the right ventricle is on the left (bottom "pumping" chambers). If you don't know anatomy, they do have different destinations (right to the lungs-lower capacity and left to the rest of the body-higher capacity) and need to be connected to the corresponding atriums so this is not a good situation.
4)She has a VSD-Ventricle Septal Defect. There is no division between the right and left ventricles so the oxygenated and deoxygenated blood is mixing, basically diluting the mix depleting the oxygen.
5)The pulmonary artery and aorta both feed into the right ventricle. The pressure is not enough to get the blood flow to the body and lungs in an adequate manner.
6)There is an unknown issue with a duct that because of the dextrocardia, they couldn't get a good picture of on the ultrasound. We'll find out about that after she's born.
7)One concern that may be showing up (they were seeing a drop in the baby's heart but could have been caused by other things) is that the electrical nodes that regulate beating and rythmn may lose the ability to communicate because of the VSD. If that happens, cardiac arrest and stroke are likely after birth.
What can they do?
Well, in addition to presenting us with the problems, we were given the surgical options. They all have very, very good success rates. They are, however, complicated by the dextrocardia and the unknown issues that come up.
The first surgery will be shortly after birth once she is stabalized. We will deliever at Mount Sinai Hospital and she'll be immediately transported to Sick Kids into the Neonatal Intensive Care Unit (NICU). Within 6 weeks they will put in a shunt into the pulmonary artery to expand it.
The next one will be between 6 and 12 months of age when she has gained weight and gotten stronger. The right and left ventricles will be seperated (baffle operation). The pulmonary artery will be sealed at the end and have a bypass conduit attached ending in the right ventricle. There will be "overpass" and "underpass" conduits to reconnect the other areas. The goal is restoring normal blood flow direction and pumping chambers.
Subsequent operations will be changing the conduits as she grows and there is a potential for the baffle to become obstructed so that will have to be redone. There may be a need for a pacemaker and a heart transplant if the blood flow does not normalize and/or the pulmoary artery continues to collapse.
We are looking potentially at spending the first year of life or more in hospital with frequent surgeries throughout childhood. We are encouraged though that this is considered to be moderate in terms of risk-they have seen worse cases. We have received excellent care at both hospitals and are so thankful to the Lord we are not in Brazil, or even Acton, as we are closer to Toronto and the GO line which has saved us driving into downtown Toronto. We are also thankful OHIP covers all of this. It's amazing to think that all these things were discovered on a heart that's the size of a peach pit!
We are still adjusting to the news-it may not really sink in until we see her in the NICU but in all this HE IS ABLE! Please pray as we seek His will for us in terms of ministry; we are now exposed to a whole new area that we never would have thought we would ever be a part of.
One last thought. We are fearfully and wonderfully made! Some have asked how Elysha could survive in the womb with such defects. During development, there are two conduits coming off the heart that attach to the umbillical cord. The heart is essentially bypassed until after birth when the cord is cut, then the conduits fall away and are absorbed. Evolution? Random chance? I don't think so!
"My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever." - Psalms 73:26
Betty's first visit to our home following her cancer treatment.
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