Featured patient of the week is CDH survivor, Francesca Garcia. Francesca is the daughter of our California CDH International Ambassador, Francesca Dubroy. Francesca had this to share about her precious daughter:
“My name is Francesca and I am a mother of an undiagnosed CDH survivor. This is the first time I have told her story publicly and it has taken me 7 years to do so.
On March 16th, 2012, I went to see my doctor for my regular checkup. I was 40 weeks and maybe 4 days past my due date. The doctor was doing an ultra sound and noticed at the time that I had zero fluid. The nurse and doctor asked me if my water broke, and I told them no, I don’t think so (1st pregnancy). They then continued to advise me that I needed to go straight to the hospital. Luckily my Mom came with me. I called my husband (Gabriel) and told him that I was on my way to the hospital to go and get admitted. I explained to him that I had no fluid and they wanted me to go immediately, no emergency though. We arrived at the hospital and they quickly admitted me. They started to induce me, but then my daughter’s heart rate dropped. They tried to turn me on my other side and her heart rate came up and then dropped again. At this time the doctor asked me what my delivery plan was. I told her, I do not know whatever is best for her. She said I think it is best that we do an emergency C-section. I replied okay. They got everything set up. C-section went perfectly smooth. The doctor proceeded to tell me “Good decision Mom.” Francesca had a true knot in her umbilical cord and one more twist would have cut off her air supply. I got to see her before they took her to get cleaned up. She was breathing okay when she came out. They took me to the recovery room. I remember hearing the nurses (in recovery room) saying something was wrong, that my baby was not with Daddy. They came over and told me that it was very important for me to wiggle my toes. I tried to remain calm, I remember thinking to myself MOVE TOES! Finally they moved just enough. They took me to my family….everything gets a little blurry now. All I remember was them bringing me my sweet little angel so I could give her a kiss goodbye. I was so confused on what was going on. My husband said something was wrong. She had started to turn blue. They needed to rush down to Kaiser’s NICU immediately. Never did I think that this would be the 1st and last time I would hold my baby for over a month. I waited in the recovery room while my Mom and husband went to get more of our things from our house. My sister in law and brother in law stayed with me. I freaked out, I remember telling the doctor I cannot stay here at this hospital I need to be with my daughter. Sometime had gone by and they got me an ambulance and finally I was at the other hospital with my angel. The next time I saw my baby she had been intubated and had so many tubes in her. I thought to myself what the hell happened. The doctors came in and told me she had CDH. I had no idea what that was, so what do I do next google it. BAD IDEA. The next 3 days my husband and I just tried to get this all figured out and try to understand what CDH was. How did it happen? What did I do wrong? One of the hardest things that I dealt with when learning about CDH was that there was no same path or same kid, so you couldn’t compare, it was the unknown. The unknown if my baby would survive.
Then it was time for me to go home from the hospital. I remember trying to stay as long as I could, pretty much lying about pain so I could be close to her. The thought of her being there without me was killing me! When I got home I walked into her room and cried the hardest cries ever. I sat in the rocking chair without my baby, I looked at an empty crib, and cried, and cried. My heart was broken, my head was confused, and I just wanted to wake up from this, what felt like, a horrible dream.
Well, week one went by and she was not getting any better, she was getting worse. Her Co2 levels would not come up, they needed to move her to Rady’s Children’s Hospital because she was now a candidate for ECMO. She was at Rady’s for about 1 week and she was not getting any better, her Co2 levels were up and they were down, every day was a roller coaster. Then the doctor came over and said it was time for ECMO, she needed to give her lungs some rest, and she had started blowing holes in her lungs due to the ventilators. I asked my doctor, what do we do if ECMO does not work? He said with tears in his eyes “Nothing.” I dropped to floor, my husband grabbed me and we just held each other so tight crying. I have never prayed so hard in my life for anything like I did for my angel. After 14 days of ECMO, 21 machines, two 24 hour nurses, and who knows how many other nurses, she was ready for surgery.
Francesca came out of surgery great. CDH babies are truly miracles! Every day I was seeing machines coming off. Finally the nurses came in and asked me if I wanted to hold her. I said YES!!!! They told me to get comfortable cause she will have to be in my arms for at least 2 hours. It took 4 nurses to get her out of her bed and on to my lap, she had too many tubes still in her. It was a very happy day, and a day I will cherish forever. She continued to improve rapidly at Rady’s and then it was time to go back to Kaiser, so she could finish her recovery. Every day she got stronger, we still had bad days and good days. Always a roller coaster. I cannot stress it enough but when your baby has CDH, NO ONE is the same case.
104 days she spent in the hospital, she had 4 surgeries. Which included, ECMO, CDH Repair, ECMO removal, and a G- tube. It was July, and she was ready to come home. The day before I was going to bring her home she turned blue. She had chocked on her saliva or mucus. I remember thinking how am I going to take her home like this? I even asked the nurse if I could take one of the machines so I could watch her oxygen levels and heart rate. Of course, she replied “No.”
There is so much work a CDH parent does. It is not just being a Mom or Dad, now you are their physical therapist, their nurse, their doctor, and you know them better than anyone. I cannot tell you how many emergency room visits we did in the 1st year (probably more than 20). The ER doctors would sometimes ask me if her breathing looked normal causes they did not know anything about CDH. I worked a lot with Francesca. I had to do neck stretches everyday 2-3 times a day so her neck muscle would be okay, I had to wrap her hands in these little cast so her thumbs could heal correctly, leg stretches so she would not be bull legged, and the feeding tube (the kangaroo) I couldn’t use it I actually got up every hour on the hour with my husband feeding her 1-2 ounces of milk so she could eat the proper amount she was supposed to. It was hard but worth every moment. Francesca is our Miracle baby.
She is now 8. Francesca loves pretty much everything except ketchup (haha). She is one of the most loving girls & is the best big sister to her awesome little brother Jovanni. Gabriel and I are truly blessed. Thank you for letting me share my daughter Francesca’s story. To all CDH families, we are now one big family. Bless our angels here and our angels who have received their wings.”
