Russell, Bennett Rezsö

[left:0a07273068]http://www.cherubs-cdh.org/Album/new/russell-bennett2.jpg[/left:0a07273068]From the moment I found out I was pregnant. I was over the moon – my whole family was. Bennett was going to be my first baby, and was a very wanted, if not planned, baby. His big brother Drew (my husband’s son from his first marriage) had requested a little brother, and we were very happy to be able to fulfill his wish!

I was about 19 weeks pregnant when we found out that Bennett had a Diaphragmatic Hernia. I had been sent to a perinatologist, for what they thought was an amniotic band, “not a big deal, just something to keep an eye on”. When the doctor said that Bennett had CDH, it felt like the wind had been taken out of our sails! To make it worse, the doctor has only seen this once in his 20 years of practice – and didn’t really know, I guess, what to do. I felt very lost – what do we do now?

My sister, Jolika, found Cherubs after searching the internet. I read what other people had gone through with their Cherubs – some with happy endings, some not. I read everything and anything I could find out about CDH, as did my sister. I would tell my husband, Andrew, our findings (he is not one for sitting in front of the computer!). We knew we had a long tough road ahead of us but we were pretty positive that we were going to get through it. It never entered my mind that we wouldn’t.

We pretty much had to figure out what to do and where to go. We live in Hope Town, an island of the Abacos in the Bahamas. So we knew we would have to go somewhere in the States that specializes in CDH. We knew we either wanted to go to Shands or CHOP (Children's Hopsital of Philadelphia). Friends of our’s had friends in Philadelphia, who happened to be a heart surgeon and had done his reseidency with another doctor who knew Dr. Scott Adzick(head of the Center for Fetal Diagnosis and Treatment at CHOP). This lead to me being contacted by Kelli Young (Kelli Young is the Surgery Advanced Practice Nurse in the Pediatirc Neonatal and Fetal Surgery Dept. at CHOP) She is also such an amazing person who helped to make this horrible ordeal that little bit better. She was also the first medical person to really explain what we were up against.

A week later, we went to CHOP, and that was when our world started to crumble. We knew that Bennett's stomach and probably his intestines were "up" - we also knew that we did not want his liver to be up - that would be a whole lot worse. After a day of testing, MRI's, scans, etc. we met with Kelli and the doctors and they told us what we were dreading to hear - his liver is up. I just started to cry, because I knew that our little baby was going to have such a battle ahead of him. We were also told that his lung to head ratio was not good - basically because all of the organs that were in his chest cavity, Bennett's lungs were not having a chance to grow. It was one of the worst cases they'd seen. That was December 14th, I think! They told me to return mid-January – I was so happy that I was going to be able to spend Christmas with my family! Drew was due to spend Christmas with us for the first time and everyone was excited. Bennett’s due date was March 6th, but they wanted me there earlier because the amnion and corion membranes of my placenta were not fused together and they were worried that it could rupture at any time. How little did we know then….

A week later, everything came crashing down. I noticed a pinky-brown mucous-like substance after I had gone to the toilet. I called my doctor here in Abaco, and also the on-call obstetrician at CHOP. I was told to spend the rest of the weekend in bed and go see my doctor on Monday. So I did, and everything was fine. That day was my husband’s birthday, but because everything going on, we did nothing. That night, about 2:15am, I lost my amnitoic fluid. I was on the phone with my doctor here, trying to figure out what to do. Finally my brother-in-law drove us to the mainland, which is only accessible by boat. Because of bad weather between here and Florida, I could not fly out then. I flew to Nassau first thing in the morning, where after examining me and finding that I had lost most of my amniotic fluid, they were going to airlift me to the States, but then I was questioning, if CHOP had given us 50-50 chance that Bennett would make it IF I made full-term, then, at 29 weeks, did he have a chance?

Was it worth the extra stress of flying elsewhere? Once again, I called Kelli. She explained that I would have to be at least 32 weeks for Bennett to go on ECMO - that his veins would be too fragile any earlier. So basically, I would give birth and he would just go to sleep because of the lack of oxygen. Even if I could get to CHOP, there was nothing more that could be done. Kelli continued to call me at the hospital, to see how I was doing; she made herself available to the doctors in Nassau (they hadn’t had much dealing with CDH) if they needed any information or help from her. She called my husband in Hope Town before he went to pick up his son Drew in Minnesota (I told Andrew to go get him and bring him to Nassau, while I flew to Nassau – Drew could spend time with his cousins while I was in hospital – I didn’t want his Christams to be ruined too), to see how he was doing. And she checked up on me after I got out of hospital. As far as I am concerned, she went above and beyond what she had to. And words can not express what her support meant to us.

So I was induced and on December 22nd I started going into labour. Much to my horror and pain, the anaestegeologist that was on call could not be found. I had to do it with Demirol only – I was not happy! Up until this point, my sister Jolika had been by my side during the day, my Mother taking over the shift after she finished work, with many quick visits in between. They pretty much held my hand and my heart through all of this. During the worst of my labour, my husband arrived, coming straight form the airport, after dropping Drew off at my sister’s house. He walked into the room and walked right out. I don’t blame him – I was screaming the whole place down. And then, there he was, Bennett. My husband, and my brother, hearing the lull, came in. Up until the day before, we still had not decided on a name. Then I thought of one name that had stuck in my mind – Bennett, meaning “little blessed one”. I talked to Andrew and we agreed. Bennett was handed to me, so tiny and beautiful. He attempted to take a few breaths – thank goodness Kelli had warned me of this, so we were as prepared as we could be. He never opened his eyes. And then he quietly slipped away. I remember at one point wanting to open them, but then deciding against it. I just couldn’t believe it was all happening…that he was gone. He never cried, never made a sound.

We both understand that things happen for a reason – we know that Bennett would have had such a long and hard road ahead of him. And we know that with us living here would have made things even more difficult – no hospitals nearby, etc. I would have been away for so long and Dewey would have had to stay here to work. We know Bennett would have suffered. I know that this way, the way it happened, that he went peacefully and he didn’t suffer. We know all of this. But it does not make it any easier.

From the moment I found out I was pregnant, I dreamed about my baby, what he/she would be like. When we found out that Bennett was a boy, I thought I would have been disappointed, because I had wanted a little girl. But the minute I knew I was having a boy, all I could do was think about what he was going to be like, as a baby, as a boy and as a man. It was not just Bennett that was taken from us, but all our dreams for him. I never thought I would be envious of someone else's screaming baby. I never got to hear my baby cry or laugh. We never had the chance to make any memories with Bennett. I will always wonder what our precious little angel would have been.


Written by Bennett’s mom, Erika Russell (Bahamas)
2006