So, yesterday was my birthday. Faith and I had a wonderful time at dinner with Blaise and her parents, and Ellie and her parents! I love being able to get together with parents when we all can understand pretty much exactly what everyone else has been through. The good news is, we will get to see them again tomorrow, as we all walk in the NSTAR Walk for Children's Hospital!
I mentioned a family in my last post that was coming up from Jacksonville, so that their little girl could get on Omegaven. I met Tiffany, the mom, today, and immediately all of my feelings from March of last year came rushing back, and I remembered everything I felt then, and was overwhelmed by how far Faith has come in that time... We talked for over 2 hours, and will hopefully get together once more before Faith and I go home.
As probably everyone who reads this blog knows, I believe everything happens for a reason. I didn't schedule Faith's appointments for this checkup, they were scheduled by Alexis, and I just bought plane tickets accordingly. When I found out the checkup was so close to the walk, I decided we might as well stay out a couple of extra days. And now, it just so happens that this family, whose story has been so similar to ours (and yet in many ways, so much more difficult!), comes to Boston on the day that we otherwise would have gone home!
Tiffany is here with Genevieve alone. Her husband, David, is home with Genevieve's twin sister, Gwendolyn, and her three older siblings, Jocelyn, Nathan, and Zachary. I remember how difficult it was to be here, in this huge strange city, by myself, with a sick baby... knowing that my son and husband were at home, going on with life without me. It was the most difficult, yet necessary, thing I have ever done.
I also clearly remember the costs of it all. Housing is not cheap, even in the patient housing ($30/night). Gen is in the NICU, so Tiffany can't just stay with her at the hospital, like I could when Faith was inpatient. And if you think groceries are expensive where you live, you should go shopping here sometime! On top of that, Tiffany did not have the "luxury" of flying commercial- they came on a Leer jet as a medical transport- so she had to pack pretty sparingly, and probably doesn't have a lot of the supplies she would have packed for when Gen is eventually outpatient, if she'd had room to pack them. (I was able to bring Faith's bouncy seat and a nice stroller, and we were fortunate enough to have a pack & play with a bassinet donated to us by one of our blog readers.)
I'm telling you all of this because Baby Genevieve and her family need help right now. They have been through so much, and they have so much of the journey still in front of them... I am going to copy their story into this post now, and I want to ask that if you have ANYTHING at all that you can give, anything from $5 to even being so generous as to donate a pack & play w/ bassinet for Gen to use when she is outpatient, please contact me, or go to one of their websites to make a donation: www.prayforgenevieve.com or www.brorsfamily.com
Genevieve Brors is a 3 month old little girl, born with gastroschisis. She is a twin sister to Gwendolyn and little sister to Jocelyn, Nathan, and Zachary, and daughter to Tiffany and David Brors. Genevieve was at Wolfson’s Children’s Hospital in Jacksonville from when she was born on Feb 17th until June 11th . She is now at Children’s Hospital Boston.
This is her story, as told by her mother, Tiffany:
Genevieve has had a lot of complications in her short life. She was born with gastroschisis (her entire intestine on the outside of her body). A portion of her small intestine had died off and therefore was not attached to her stomach. Because the actual intestine was not attached to anything at one end it did not develop normally and was shriveled and full of holes. At 3 hours old, she had her first surgery to repair all of the holes in her shriveled intestine.
She spent 8 weeks with an ostomy bag (a bag to collect everything before it goes into the bowel) so that nothing would pass through her intestinal tract, allowing it to heal. When Genevieve was 8 weeks old she had her second surgery, which reattached her intestine to her stomach and closed up her belly.
Things kept going along well, then we would have a set back, then they would get better, then we would have a set back. Finally we thought we were about ready to take her home. She was eating well and going to the bathroom like she should! We were so excited to have her coming home.On Mothers’ Day I was there visiting with her and she was acting strange, crying a lot and just seemed uncomfortable. It was just out of character for her, she is a normally happy alert baby who is easily comforted. About 7pm I left and on the way out the door I mentioned to the nurse that she seemed gassy and to please ask the doctor for something to relieve her pain. By the time I got home Genevieve was almost dead.
I called the hospital when I got home just to check on her and I couldn’t get a hold of anyone. It took about an hour and the doctor called us to say that she was really sick and they were calling in the surgeon immediately. She said to get there as soon as possible. Surgery called us shortly after to get permission to take her back to the operating room over the phone because they were pretty sure she wouldn’t live long enough for us to get there and sign it. When we got to the hospital the priest was baptizing her and doing her last rites. We were in a daze. They rushed her into surgery and left us by saying that they didn’t expect her to live through it so say good-bye. I was absolutely devastated.
Genevieve made it through that surgery alive with only a 10% chance. Her intestine had twisted and died inside her. It caused her to get a deadly infection called NEC that basically kills the affected tissue and starts decomposing it while you are still alive. It is horribly painful. She was too sick and swollen to put what was left of her intestine back into her body so they put it into a plastic bag called a silo on the outside of her body. She was tremendously sick but she was still alive against all odds.
Her surgeon came to check on her the next morning and noticed a few areas that didn’t look very good on the intestine that was in the silo. She scheduled Genevieve for her 4th surgery the next day to investigate those areas. The next morning she was taken back to surgery. Her surgeon thought there would be a few inches of not so good tissue that needed to be removed. We were not so lucky. When the surgeon began to investigate her bowel she found that most of it was dead. It was so bad that the surgeon herself called us during the surgery and told us that she was in even worse shape that the previous surgery where she only had a 10% chance of surviving it. Her odds of surviving we so low that she couldn’t give us a percentage for survival.
When she had finished salvaging what she could of Gen’s intestine we all had a meeting. The news was devastating. Genevieve didn’t have enough intestine left to survive and what was left was sick. The surgeon had to sew live tissue to dead tissue because of where the bowel had died. She was 100% sure that it was going to leak stomach acid into her abdomen so she left her cut open and put a vacuum over the wound to pull out the acid so that she wouldn’t start digesting all of her internal organs.Her liver was also failing because she had been on IV nutrition for so long. IV nutrition is not designed for long term use and causes acute liver failure. She needed a liver and bowel transplant if she even made it through the night. She said that we couldn’t even go day by day because it was minute by minute with her. She was deathly sick.
But Genevieve hung on. We were counseled to make her comfortable and let her pass because the life of a transplant patient is hard and she didn’t have much of a chance anyway, and because we have 4 other children to care for. Genevieve refused to give up. She was not ready to die. We agonized over that decision and decided that if Gen was willing to fight for her life then so were we.
Within a couple of days Gen was fighting against the ventilator but her doctor didn’t want to take it out incase she needed another surgery. It was really bothering her though so she grabbed it and pulled it out herself. Everyone was amazed that she was breathing perfectly on her own. Three holes opened up in her intestine, but her surgeon expected that and the wound vac was keeping her from getting an infection. Gen was healing so aggressively that her belly wall actually started to close under the wound vac. Her body is so incredible!
Anyway, over the last two weeks in Jacksonville, some amazing things happened. She was able to have 2 drains removed from her, she is breathing on her own, she came completely off antibiotics, the wound vac was replaced by an ostomy bag, and one of the holes in her intestine closed on its own. All of the doctors were astounded at her progress. The only problem with all of this was that she was still on the IV nutrition that was causing her liver to fail. Everyday her liver got worse because of it.
The doctors in Jacksonville did their best to minimize the damage and only gave her the lipids (what causes the damage) 2 times a week. However, this wasn’t enough calories for her to grow and develop, so it was a balancing act to keep her alive on the medicine that was killing her.Thankfully, there is a different kind of medicine for the IV food (called Omegaven) available at Children’s Hospital in Boston, and it has been shown to reverse the liver damage in over 200 children with similar conditions. After three appeals to the insurance company, they finally approved us for a transfer to Boston for 30 days. On June 11th, Genevieve and I transferred to Boston.
The costs for transport, long-term hospital care, relocation, medicine and transplant are astronomical! Just the one medicine (Omegaven) is $75.00 a day. So far we have been paying for minimal expenses in dealing with all of this but even now it is adding up. We have 4 other children who are out of school and we have to pay for care for them because we have to spend so much time at the hospital.
We were commuting an hour each way to the hospital sometimes several times a day while Gen was in Jacksonville. My husband’s mother passed away on Memorial Day, so we have had to buy plane tickets to Chicago and deal with those expenses. The list goes on and on.