Saturday, June 27, 2015

June 27 - Dear Nicholas Sparks (Guest Blogger Gabriela Frietag)

Dear Mr. Sparks,

On June 22nd 1998 I found out that our baby had CDH. We were only 6 weeks away from the due date and this news was just devastating for us. On that first night I was so anxious to get any information about CDH, since I only received limited Info from my hospital that day. Fortunately I found CHERUBS on the net that first night and I am ever so grateful. I admit, I did cry every time I read a story. But at the same time it gave me information; Not only about CDH itself, but also how other families dealt with it and what I had to expect. This was my second child. I have a perfect life; my husband and I grew up in Switzerland and have been living in this country for the last 15 years. We just celebrated our 10th wedding anniversary, we have a beautiful 5 year old, own a home and have a successful business. This pregnancy was going fine, morning sickness and being tired all the time was the only complaints I had. I turned 35 in spring. There has been no birth defects in my family. I was never concerned about anything and therefore decided against having an amniocentesis test. I was "heavier" than with my first born, and that is what ultimately caused the Ultrasound check-up, were they discovered my baby's birth defect.

We were very fortunate that our hospital referred us to UCSF and that we only live one hour away. Doctor Hawgood was the first Doctor we met and he was the one that explained CDH in details to us. Now we knew what to expect. We knew that our baby boy had a left-sided CDH. We knew that the liver was up and that his little heart, even if squeezed to the other side, was healthy. And we knew that it did not look very promising. I remember crying while listening to Doctor Hawgood's words. Life had changed for us and was not going to be the same ever again.

Until birth I received premium care at Kaiser, my regular hospital. I did an amniocentesis test after all, and the result showed us that our baby was o.k. otherwise. Twice a week I went in for a stress test and once a week for an ultrasound check-up. It was a long five weeks. As planned at 39 weeks birth was induced at UCSF and on August 4th Thomas Alexander was born. We were only able to get a quick look at our newborn baby, before they rushed him away. Since the time I had found out how very sick our son was, I was very scarred of this moment. It was hard to imagine not being able to hold my baby, and it was even harder to go through it. I cried, my heart was aching. After Thomas' intubation they brought him back into the delivery room hand ventilating him, for us to see him once again. I remember thinking that the reason for bringing him back was because they didn't think he was going to make it. It was a sad moment, but at the same time I appreciated it so very much. I was too scarred to touch him. Later that morning they "wheeled" me into the ICN and I saw my baby laying there, Pavelon-paralyzed, hooked up to tubes and wires. Thomas was connected to an oscillator, I didn't see my baby, it was only the wires and my pain I saw. Later that day, our social worker Stephanie along with Doctor Poulaine visited me in my recovery room. Thomas was not doing well, we were talking about ECMO. I was devastated. My husband and I had decided not to use ECMO on Thomas. Then Thomas' very critical condition "improved" to critical. I had to face another heartbreaking thing; going home without my baby. I felt just miserable. I did not see my baby for one day. That was the only day I missed visiting Thomas..I started to drive to the hospital every day. How fortunate I was to only live one hour away. Since all our families were overseas, it made this situation just a little trickier. My sister Karin came over for 6 weeks and helped us out and I'll always be grateful to her.

That following Saturday morning I received a call from UCSF. They were going to start to operate on Thomas within an hour to fix the hernia. They wanted our consent. We then immediately drove to the hospital hoping to make it there before they started. We also had a chaplain waiting to baptize Thomas. We got there in time. Finally we would find out, what and how much exactly was hiding in Thomas' chest. Doctor Farmer found some diaphragm muscle so she was able to attach the large gortex patch to it. She also discovered and removed a rather large piece of extra lung tissue. The operation went well. Doctor Farmer left her signature; a pretty choochoo train cutout bandage to cover the incision.

Now the waiting started; Recovery, and to see how much lung he actually had. Thomas recovered rather well. But he had very little lung. On August 10th I saw his eyes open for the first time. I was the happiest person on earth. Finally on August 14th we took Michael to see his baby brother. Michael reacted well. The nurse that day, Laurie, was so nice, she covered some of the tubes and she let Michael take Thomas' temperature. She made that first visit special. From then on we took Michael once a week to visit Thomas.

The following Saturday night we woke up to a phone call from the hospital. Thomas had developed pulmonary hypertension, they asked for our consent to start him on the Nitric oxide treatment. We agreed to it and Thomas reacted very well to it. Again it seemed to be going into the right direction. Thomas was able to take breastmilk through a tube for a couple of days, then he received a special formula for a few days, then the feedings stopped all together. We started to wean him off some medication, but eventually started the same again or put him on something else. We started to run out of room for his IV's. Twice we tried to put him on a regular ventilator, but had to put him back on the oscillator. Some settings on the oscillator went down one day and then right back up again a few days later. High hopes one day, disappointments the next. We were in the middle of that roller coaster ride they had talked to us about.

Going to the hospital every day was part of my life now. Every day I would massage Thomas with lotion, give him a pep talk and all the love I had. The ICN became my second home; all of a sudden nurses, doctor and other hospital workers were part of my family. On September first Thomas smiled at me for the first time. I was so happy and I felt so good. I had an extreme amount of stress, but I felt good. By this time Thomas had us all surprised. I think nobody expected Thomas to do so "well", or even live this long.

In the beginning when I had found out how sick Thomas was, I rejected the thought about having a "disabled" child. Now, it didn't matter any more. I loved my baby too much for it to make any difference. Since his hernia repair Thomas was struggling with his Chylothorax. On Labor Day weekend Doctor Harrison performed a thoracic duct ligation. We were able to remove the chest tube a week later and we believe the ligation was successful. But Thomas never really recovered from the surgery. He got infections and the treatments just didn't do well. The condition worsened. After loving Thomas for 39 days, we had to let go of him.

On September 11th our sweet Thomas passed away. We held him in our arms to say our good byes. Finally he was free of all the pain, free of all those tubes and wires. Our pain is deep and it seems like it will never go away. After this experience my husband and I are closer than ever. I have a few pictures and other momentos of my sweet baby. I will always be grateful to all the skilled Doctors, the compassionate nurses, our supporting friends. But most of all, I will always cherish the moments I had with Thomas, my sweet little angel.

Thomas' mom, Gabriela Frietag (California)

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