What's going on??

So I know on Tuesday I told everyone I was going to find out the gender of the baby and then I disappeared for the rest of the week. Well the baby is a boy and he has some complications. Very simply the baby has received a fatal, terminal, not compatible with life diagnosis. Instead of explaining every fine detail to each person who asks I am posting it here and will refer people here for more information. My son, Kamil Sefraoui, has been diagnosed with a Lower Urinary Tract Obstruction or LUTO caused by a Posterior Urethral Valve or PUV. This is a rare condition affecting 1:10000 boys. This diagnosis by itself is not fatal however as you may read more about each diagnosis you will learn the blockage of urine also blocks the fluid from returning to the babies lungs and results in hypoplastic lungs. This means the babies lungs don't get to practice breathing in the womb during critical lung development.



So Kamil was found on Tuesday with no amniotic fluid around him, kidney damage in both kidneys due to the back up of urine, a grossly enlarged bladder, and thickness at the back of the neck. He was seen by Neonatologist Dr. Stanley the same day. The Dr. performed an amniocentesis test and bladder tap to 1. drain the excess fluid from the Kamil's bladder and 2. to take some liquid to test for birth defects or genetic problems. On Thursday I learned there were no birth defects such as down syndrome or chromes 13/18 or something like that. We did a second bladder tap and drained almost as much fluid as we did on Tuesday. This is a small positive sign that one of the kidneys is working. The negative test and working kidney are important because....



There is a fetal surgery the Dr. can perform to place a shunt in Kamil's bladder so he will have an outlet to release the fluid so it will stop building up in the bladder. There are certain parameters the baby has to meet to be eligible for the procedure. One the amniocentesis has to be negative for genetic defects and it was. Two one of the kidneys has to be functioning at a level that can maintain after birth. So I will find out on Monday if Kamil is a candidate for this procedure. Dr. Stanley and myself are both VERY aware that this will most likely not be the case. Even if he did hve the procedure it's extremely risky, the babies move so much that they either can't get the shunt in place or the baby kicks it out. The shunt does not resolve the hypoplastic lung or low amniotic fluid problem. So on the one hand his kidneys are failing and damaged and on the other hand his lungs are not getting to develop.



What this means.... I am preganant with a boy. My due date is May 22, 2010. I am going to have this baby even though I know he will die. I have the option to terminate/abort/kill my baby and I will not do it. The Dr.'s tell me there is not the slighest chance he will live but that's not up to me. After Kamil is born we will be provided comfort care in the hospital. He will not be put on life support or any machines. There will be no medication or drugs. After the birth it is gods will what will happen. So I will keep the updates on this blog for family, friends, and anyone else experiencing something similar.

As some of you may know this is not the first baby I will lose. This is my fourth pregnancy. My first pregnacy was fine I had a baby boy Ali in 2005. Two years later, 2007, I had to induce labor for my 20 week old son, Yahya Sefraoui, who died in utero and my body did not miscarry. I had a 12 hour labor with him and he is buried in Mercy Cemetery in Oklahoma City, OK. In June 2009 I became prganat again and lost that baby at 8 weeks. I became pregnant with Kamil in August 2009 and received his terminal diagnosis in January 2010. This may seem like a lot of loss to some but to me I see the blessings. I have a strong faith and my religion, Islam, gives me explanations for these losses and that is what I take comfort in. I also see the previous two losses have better prepared me for what is to come with Kamil's delivery. Please don't feel sorry or give me sympathy. I am happy, content, and strong. I do need support, friends, understanding, and an occasional shoulder to cry on. Keep in touch and check back to keep updated. With much love.