A Story of Faith, Survival, Loss and of Hope for the Future – By: Anonymous

Every married couple once they hear the news that they are expecting their first child is overcome with joy: “Wow we are going to become parents!”.  For my wife and I, it took four long years to achieve this goal. In 2009 our first pregnancy was miscarried at 13 weeks and we were told the cause was “infection”.

In 2010, we were given a second chance and we were coasting along great. That was till the 21 week mark. We were in the midst of packing our belongings to move the following week into the home we purchased in New Jersey. It was a very hectic time in general. We came to the doctors office for the checkup, the sonogram tech was taking a long time and then was taking longer than usual. She then said “I have to call the doctor in”.  We immediately started to panic “what’s wrong with the baby??”.  The cardiologist came in, looked at the pictures and told us our worst nightmare — our baby had Tetralogy of Fallot with Pulmonary Atresia aka congenital heart disease.  Her pulmonary arteries were very small, and her heart was not pumping enough oxygenated rich blood to  her to look somewhat blue.  She further explained that upon birth, within a week the baby would need heart surgery to correct the issue.

 

We left the office in tears. “How could this happen?” we asked ourselves. We were doing everything right, and now we were facing two enormous challenges: Moving, and proceeding with the pregnancy with this information at hand. We were given the options to go to Morgan Stanley Children’s Hospital or Mount Sinai Medical Center in Manhattan. We chose Columbia over Mount Sinai due to the fact that I worked at Mt Sinai at the time, and felt it would be best if I wasn’t really too close because I would not be able to focus once the baby was born there with all the complications. Plus, Columbia had a better reputation and had done more than double the pediatric cardiac cases than Mt. Sinai had We met with their pediatric cardiologist and then later with their Chief of Cardiothoracic Surgery.

Due to the complications, it was decided that my wife’s labor would be induced on November 28, 2010. Saturday Night the 27th, my wife’s water broke and we went to the hospital. Many hours later, which seemed like eternity, she was still only at 4 cm, and the doctors decided that  because my wife was really stressing out and the baby’s heart rate was dropping, to do an emergency C-Section. Of course this was not our plan, having a C-Section, but we had to do what was best. About 45 minutes later, Baby  came into the world at 12:35pm weighing 5 lbs 12 oz. I didn’t get a chance to see her being born as they would not allow me in the O.R. with my wife.

I finally got a chance to see her in the NICU, she was soo cute, I could not believe she was my daughter. She had a cute bow in her hair and eyes that made you melt. We spent 2.5 months in the NICU. She had her first cardiac procedure within a week, she recovered nicely from that.Following the surgery we had an issue with feeding her, so  they had to put a feeding tube in to assist. She fought her way through it, and after many battles with the social worker and physicians, we were able to take her home for 5 weeks before she was scheduled for open heart surgery at 3 months. Those weeks were very challenging from administering her formula via the feeding pump, to giving her medications every few hours.  Every family member and friend who could possibly come, came to see her and she was really well behaved with them.

 

Then the day came. March 16, 2010. She had a 6 hour open heart surgery which was supposed to correct her issues. Waiting for her to come out seemed to last forever. The surgeon finally came out to us and said he tried his best, but everything was so small he didn’t want to do a complete repair, so he did what he could and told us we would have to see how things progressed.  She was connected to a respirator for a few weeks, and finally she got off it.  She was ok for a while so they started to make plans for discharging her.  Suddenly one day she went into respiratory distressed and had to be reintubated. This lasted a while, during which time she suffered several hospital acquired infections. Which then led to her entire bowel being destroyed and surgery again but it was of no use, she was left to die as surgeries were no longer an option.  She was transferred to hospice care in Queens for a month and a half and passed away at 9 months of age on Labor Day, September 4th, 2011. We buried her the following day, next to her great-great-grandparents under a cherry tree.

 

 

We sat shiva (7 days of mourning in Jewish faith) for her and we were visited by family and friends from all over to convey their feelings of sorrow over our loss. It was one year later and we missed her dearly. When we began IVF we were advised to perform genetic screening because our baby had inherited an immunodeficiency syndrome called DiGeorge Syndrome. I strongly encourage anyone deciding to build a family to first go through full genetic screening to determine if there is anything wrong beforehand. Go to https://www.counsyl.com/ to set up an appointment for the screening.

 

In the Fall of 2013 through the help of The One Above and 2 cycles of IVF with PGD and assistance from  charitable organizations. We welcomed our son into the world, born BH (thank G-d) healthy at 8lbs 12 oz and is now 18 months and runs around and is a joy.

My wife and I have seen it all, and it took a long time for us to get to this point, with many obstacles in our path. My point in telling you our story, is to give you hope and faith in G-d that you will be able to experience the joys of parenthood without any more struggle. You have suffered enough and my prayers are with all of you.

2017-03-17T12:41:55-04:00

Leave A Comment