IVF Miracle

submitted by Melissa Karzazi, mom to Samir

So… let me tell you about my little IVF miracle. The diagnosis of being infertile seemed so final. We tried to get pregnant for 5 years before turning to IVF. We chose not to do genetic testing prior to implantation because, at 35 years old, in the IVF world I was considered young and at low risk. He was the best looking one in the batch, so we did the fresh transfer, and it worked!! Miscarriage was not a part of our journey, and we were so pleased. In the second half of my pregnancy, Samir would have low activity for 2 days and then party on the 3rd day. This was his pattern. I did not bring it up to my OB because I truly thought he was fine. My whole pregnancy, I was adamant that I was not going to be induced, and I was not going to have Cesarean. Samir had other plans. He was born at 40 weeks 2 days.

Now comes to the hard part of the story. Samir let out maybe a 5 second cry and the NICU team took over. It’s crazy how peacefully calm I was in this moment. My son was an hour old before I was gurneyed into see him. It is the most unnatural thing in the world to have just given birth and be separated from your child. He was 12 hours old when they finally let me hold him. They told me he was floppy, and I just lived in a land of denial. I thought maybe he just has my husband’s temperament and is calm. I sent my husband home that night. Although in pain from the cesarean, I was getting out of bed ok. Once he left, I had my own private moment of falling apart. By day 2, I was walking myself to the NICU, I still had not seen my son open his eyes. As the neonatologist’s concerns increase, my denial faded.

In the morning of day 3, I started to realize that maybe my baby won’t come home with me. Little did I know that day 3 was going to be the worst day of our lives. Our son finally woke up. I was pumping bedside, and we got so excited. My husband, Lotfi, started to play with him and do stretches. After 10 minutes of this, we wanted to show the nurse. She came in and ran straight back out to the neonatologist. We were informed that she suspected him of having seizures and that he needed to transfer to a more equipped hospital. I went straight into “I need to get discharged, and you need to go make sure there is gas in the car”. I wouldn’t look at my baby. The neonatologist had to insist, a couple of times, for me to stop and kiss my baby. It was all so hard.

Samir stayed on seizure meds for a week as I learned to advocate. EEGs did not confirm seizures so, as he was slowly taken off the meds, he finally woke up again. My expectations for my son’s life had reached an all-time low. I remember thinking “if he has enough faculties to know that he is loved, then I think I can find it in me to change his diapers and bath him well into his adult years.” I was at this point when I had heard of Prader Willi Syndrome, and I had googled it. Nobody wants their child to have any kind of diagnosis but because I was already so low, I was able to find my glimmer of hope. He will walk. He will talk. And, although it took a lot of searching to find out, he will have a fairly normal childhood.

Genetic testing for PWS finally came back when Samir was 4 weeks old. It wasn’t a surprise and Lotfi and I were both in a more accepting place. By this point we had already joined one support group and combed through the PWSA USA website. I have a background working with individuals with special needs and it just felt like it’s time to roll up our sleeves and get dirty. Game on, Let’s do this!!! My expectations for Samir will be the same as I would have had if he were “neurotypical”. I am a year and a half into his diagnosis, and I still have thoughts of “how can I help shape him into being a good husband one day?” Bottom line is that we are so pleased to be his parents, and I am so excited for his future.

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