On Monday we had an appointment at BC Women’s hospital. For those of you that weren’t aware (most people), we got a call a week ago that there were some concerns about our 20 week ultra sound. We had a meeting with our doctor here in Oliver and he went over some issues, nothing which seemed super serious in nature. We were given an appointment at BC Women’s hospital less than a week later so that they could get more information. This has all happened super fast! Not sure how to start, so here goes..
At our first consult appointment with a geneticist we were told more about our original scan and the concerns that were held. This ended up being more serious than what was originally conveyed to us or possibly understood by our doctor. There were issues with the kidneys themselves not just the ureter connection to the bladder.
We had an in depth ultrasound where we were talked through the entire process by the technician/ nurse and then by the specialist doctor. It was explained to us that there are major concerns with the baby’s kidneys. The scan yesterday showed that things were even more serious than the first scan revealed. Things went from bad to worse. The baby’s right kidney has two chambers (instead of one), one of which is causing problems for the other. It was very dilated and enlarged, as was the ureter that connects the kidney to the bladder (full of urine). There appears to already be permanent damage to the right kidney. Thankfully we are born with two kidneys. Unfortunately, there are issues with the left kidney as well, especially the ureter that connects to the bladder, as it is dilated and enlarged as well (not quite as much as the right side). The major concern at the moment is the left kidney since it has to compensate for the right kidney (and it’s health is of utmost importance for the baby’s survival). There is a small cyst in the baby’s bladder right beside where the ureter goes into the bladder. It looks like this is part of the problem for the dilated left ureter. Right now the baby’s urine is having reflux issues and is being backed up into the kidney’s, which is not good. The kidney’s and bladder work together to create the baby’s urine. This is also what makes up the baby’s amniotic fluid and gives it the nutrients it needs in utero. I’m not sure if that made a lot of sense. It helped that we could see everything on the ultrasound to see what exactly what was happening.
So if you haven’t already figured it out, this is all really bad news for our baby. Our team of doctors want to monitor the baby closely from this point onward. This means that we will be back at BC Women’s in about 2.5 weeks. We will also have to have ultrasounds done aprox every month. They are unsure at this point if we will have to go to Vancouver for every scan or if we can do some in Kelowna and set it up so that they can be monitoring the ultrasound from Vancouver (it will depend if things get worse or better). The monitoring will help the doctor know if things are getting worse or staying the same. They will be looking at the size and dilated nature of the kidneys and ureta, as well as the cyst in the bladder. The amniotic fluid will also need to be monitored. There is cause for concern as soon as the amniotic level starts dropping since that reflects on the kidneys not working.
The doctors also wanted me to have an amnio done right away to rule out any chromosomal issues that could be causing the kidney problems. This is when a long thin needle is inserted into the uterus to draw out some of the amniotic fluid for testing (replenishes in a couple of days normally). I couldn’t do anything for the next day or so to make sure the uterus and amniotic sac heal up properly for fear or miscarriage. They also did further blood work for more testing. *We have since got the first round of amnio results back which showed that baby doesn’t have any of the syndromes,etc. Very good news.
Monday was a really rough day. The team of geneticists and doctors talked us through a lot of possible outcomes for baby as well as options (surgery in the first week of life or later, surgery on baby while in utero, kidney transplant, termination, loss of life, etc). This was beyond hard to hear, let alone face. Everything comes down to what happens with the kidneys in the weeks ahead. Things may all turn out to be ok (with a surgery) or may not.
This is a serious developmental abnormality and just one of those random things that happens sometimes. Everything else with the baby looks great. All other organs are as they should be, there is a strong heartbeat, the size of baby is exact to our due date and fluid levels are good.
So what now? Well, we PRAY and continue to put our hope in Christ. We really need a miracle for our baby’s itty bitty kidneys. If the kidneys (especially the left one) can do their job reasonably well while in utero, then a surgery once baby is born will likely be able to take care of things and our baby will be ok. If things go downhill while baby is still inside me, then they may look into surgery in utero further. Our doctor at BC Women’s first wants to consult other doctors in Canada to get a better idea of how this could look for us, as it’s not commonly done. This would only be done if absolutely necessary. We are thankful that we already have such a great team of doctors on our side.
Naturally, we are scared, sad and unsure what to think right now. We feel fragile, emotional and sensitive. Something that seemed like a minor issue to begin with is now incredibly serious and very life threatening. So many unknowns, so many what if’s, questions that we can’t answer. This is one of those things in life that we hope that we never have to face. We are trying to be hopeful that things will be ok and that a miracle will indeed happen for our baby. We are trying to focus on the good outcomes rather than the bad. But this is tough and we’re struggling. We are clinging to the reality that God is indeed good all the time.
We would really appreciate it if you could commit to praying for our baby daily, that baby’s little kidney’s would miraculously heal up (especially the left one) and that the cyst in the bladder would become smaller. We’re praying that this baby is a fighter. Please also pray for David and I, that we would feel God’s peace in this and be able to step forward with courage and strength.
So now we wait and pray. We are doing our best to continue on with normal life as much as possible. Not only do our kids need this, but it’s best for us as well. We need to spend the next four months being hopeful and as positive as possible. I can’t live dwelling on the what if’s and being eternally sad. At this point my body feels almost cried out and a peace has started to set in. I will try to post updates on here as time unfolds and we receive more information. We are thankful for the love and support that has already been shown to us, it’s much appreciated. We are so thankful for a loving community of family and friends, both here in Oliver and in the Lower Mainland (and beyond). We know we are not alone in all this.