• Alicia Assad on CaringBridge

How we got here...

While many of you by this point are familiar with the situation, here is the story of how we got to where we are.... Pregnant with my third child due April 25th, I have had a relatively good pregnancy except that our little guy, who we plan to name Henry, is suspected of having a condition called Posterior Urethral Valve (PUV). Basically PUV is a blockage in the urinary tract that causes fluid to build up in his bladder and ureters causing them to dilate and then eventually this fluid or "reflux" can make its way into the kidneys. While the enlarged ureters are not good, the major concern begins when the kidneys start to take on fluid as this causes kidney damage that in some cases is not correctable leading to dialysis and an eventual kidney transplant. When this condition was first caught at 21 weeks, due to the enlarged ureters, I was told that it is frequently seen in boys and Henry would likely outgrow it by the time he is born. I was monitored almost weekly, but around 27 weeks, I was told the ureters were significantly worse and sent to a more in depth sonogram that confirmed there is indeed a blockage somewhere causing the reflux, dilation and potential kidney damage. After consulting with a pediatric urologist, we were told that while things could change by the time he is born and they get a clearer picture of what is going on, surgery by 3 days old to clear the blockage was nearly unavoidable. The thought of a newborn undergoing general anesthesia and a surgery is a lot to swallow, but if the condition is what they are almost certain it is, the longer the surgery waits, the further the damage to the ureters and kidneys. However, anesthesia risks aside and with minimal kidney damage this would be a relatively low risk surgery, reverse the kidney damage, and baby Henry would be perfectly normal and just need lots of followup visits at the urologist. Still, I was warned that if things progressed and either the kidney damage in utero was severe or there was a drastic loss of amniotic fluid, there would be an intervention and the baby would be taken early to temporarily alleviate the pressure until he would be old enough to endure the necessary corrective surgery. Given that at all of my scans I had plenty of amniotic fluid, and the ureter size was pretty much the same, we simply continued to monitor the situation to see how it progressed. While I was concerned, I was hopeful that I would carry to term and while they were saying a surgery was "highly likely," was realistically optimistic that he could still grow out of this and it would be just another one of those "pregnancy scares." By around 33 weeks I started having very frequent and strong Braxton Hicks contractions and so I was advised to take it easy. Well, with a 2 and 4 year old and a household to manage, that is a difficult order to follow but my doctor wanted me to at least make it to 36 weeks so that the baby would be strong enough for the potential surgery. At my 36 week scan, I was relieved that I had made it until Henry was nearly "full term" and expecting the same news I always got: things aren't any better but they aren't worse. I always considered this good news. Instead, I was told that both ureters were significantly more dilated and one of the kidneys was beginning to take on fluid. After each sonogram and consult with my OB, I would call my pediatric urologist to give him results and with the fluid in the kidneys he expressed concern and asked that I come by with the sonogram photos to see if an intervention was necessary. This appointment was the next evening on Wednesday, March 27th. As I was walking out the door with Eddie to make the appointment, I heard my babysitter scream and when I turned around, saw her running to the sink with William. A pot of near boiling water had spilled on him and all I remember is ripping off his bicycle helmet and shirt, handing him to Eddie and before I knew it, was running through the doors of the emergency room at North Shore Manhasset screaming for help. We were eventually transferred that night to Nassau University Medical Center as they have the best burn center on Long Island. William had 2nd degree burns on 16 percent of his body covering his face, neck, chest and arms. By Thursday morning, he was in the operating room undergoing a procedure called Oasis where a product developed from the lining of pig intestines is applied to the burns as it has regenerative properties similar to those of skin cells. This layer is covered by an antimicrobial layer of silver to prevent infection and then a bit of gauze to hold everything in place. Most of the Oasis treatment took well, but there were areas of concern the doctors said were likely to need another procedure. After 6 nights in the hospital, we were discharged with the hopes that William would heal better at home. Indeed, in the past week he has regained his appetite, much of his personality and is walking around and playing with his brand new bicycle even though he still does not have full mobility in his neck and arms. While we were hopeful before yesterday's followup with the doctors that even William's deepest burns would simply continue to heal, it is apparent he will need a skin graft surgery. The doctors are waiting until Monday to schedule the surgery to see if this area shrinks down in size so the graft can be done on as small an area as possible. On Tuesday, I go to my OB to reevaluate Henry's situation: stay pregnant or intervene. As you can see, we are not completely certain how things will fall into place: Will we be able to address all of William's needs before Henry either decides to come or needs to come? Will the situations overlap? Will I have Henry first and then see William through the second surgery? The night of William's accident, I was completely overwhelmed with the thought that I could have both of my boys in different hospitals at the same time. Luckily, my labor never kicked in with all of the stress from William's situation and my OB and pediatric urologist decided that Henry could stay put where he is for at least another week. I am hopeful that because of all of the prayers, love and support we have received from friends and family, the care and compassion of incredible nurses, the expertise and understanding of all the doctors, and maybe just a little bit of luck...we will continue on this path to have the best possible outcome: Henry will safely remain in my womb until I can see William through all of this. As I compose this story at 37 weeks and 3 days I realize time is of the essence but I am praying that Henry can sustain a little while longer and can come as his brother and sister did at around 42 weeks. While I don't know what the journey ahead will bring, for the moment I am still pregnant and feeling well all things considered. William had a good day - he is eating, happy, active and at the moment napping peacefully. Catherine is happily playing with her Grammy and Eddie is getting his first and very well deserved break from this all. The weather is shifting - it feels like spring is finally here and while I never imagined this situation is what the spring of 2013 would bring, I also never realized how many loving and supportive people I had in my life. Wait...let me rephrase that...I have always been surrounded by amazing friends and family, but maybe I never realized the lengths they would go to support me and my family when we needed it the most. For this, I am blessed and can focus on something very positive in the current situation.

©2020 by ALICIA ASSAD.