Roberts, Brianna Mary

[left:c15b042001]http://www.cherubs-cdh.org/Album/new/roberts-brianna3.jpg[/left:c15b042001]This is the story of my daughter, Brianna Mary Roberts. On February 6, 2004, my husband and I found out that we were expecting our second child. We were very excited and our 4 year old son was thrilled about being a big brother. Somehow, I knew something was wrong from the beginning. I kept telling everyone that I just had a feeling that there was something wrong with the baby. After I made it passed 16 weeks I started to calm down. Then, on May 19th, at 19 weeks gestation, we went into my doctor's office for an ultrasound. Like most parents, we went in excited, expecting them to tell us the sex of the baby. We weren't prepared for the news we were about to receive.

The ultrasound technician was going through everything and pointing everything out to us. Then she came to the chest cavity where she pointed out the heart. I noticed a big black area right next to the heart and saw her label it as the "stomach". I thought I must have been looking at it the wrong way because that couldn't possibly be the stomach next to the heart! About 5 minutes later, she proceeded to tell us that she thought our baby had a Diaphragmatic Hernia and explained the basics of it. As I laid there crying hysterically, she informed us that it was a girl! The doctor set us up an appointment at the hospital for a level 2 ultrasound with a maternal-fetal medicine specialist to make the final diagnosis.

I was terrified and a complete mess. I couldn't believe this was happening to us. The worst part was that our level 2 ultrasound was not scheduled for 3 days, and my doctor wouldn't give me much information about CDH, he wanted to wait until we had a definite diagnosis, even though the ultrasound technician said that she would be shocked if the hospital said it was anything different. So, for those 3 days I did my own research. I read lots of facts and statistics about CDH and that was also when I found the CHERUBS website. I read many stories about other children with CDH, both survivors and angels. These stories helped me a great deal. Knowing that there were many others who had gone through what we were about to go through. The survivor stories gave me hope and strength while the stories of CDH angels helped me prepare for the reality and severity of the situation.

After several doctors appointments, ultrasounds and non-stress tests, my water decided to break on September 18th, a few weeks before my due date of October 12th. At first, the doctors wanted to hold off my labor so they put me on a magnesium-sulfate drip, but then they decided to go ahead and let my daughter come into the world. My labor progressed wonderfully, and by the time I was dilated to 9 cm, my room was completely full of doctors and nurses, mostly waiting for the baby, who they knew was going to need a lot of help. My beautiful baby girl was born on September 20, 2004 at 1:09 AM. She let out two very small and weak cries before they whisked her away to the NICU.

By the time I was able to go up and see her three hours later, she was already hooked up to a ventilator. The doctors told me that her chest x-ray showed a small right lung and they could not see a left lung at all because of all of the bowel that was invading her chest cavity. She had severe pulmonary hypertension. She was stable, but they did not know for how long and they might have to resort to placing her on ECMO (life support). This terrified me. I had read many good and many bad stories about the ECMO.

By that evening, her oxygen saturation levels were dropping and her carbon dioxide levels were high. The doctor told me that if her oxygen level dropped any more, there would be a risk of brain damage. They had to change her ventilator to an oscillator and they also hooked her up to nitric oxide. She held out through the night, but by morning, they had to put her on ECMO. The pediatric surgeon made an incision in the right side of her neck and placed two cannulas (tubes) down a major artery to her heart. One tube removed the blood from her heart and brought it out to this huge machine. The machine took the carbon dioxide out of her blood, oxygenated it and then sent it back through the other tube to her heart. The whole process looked horrifying, but I had to keep reminding myself that it was keeping her alive and would hopefully help her to get better. My husband could not even go into the room to look at her, it was too much for him.

While she was on the ECMO, her right lung started leaking fluid into her chest cavity, so the surgeon had to insert a chest tube to drain it. On one of her many chest x-rays they were finally able to see that she did have a left lung, but it was only about the size of a pinky nail. Brianna was on the ECMO for a very long 12 days. They tried her off of the ECMO on Friday, October 1st but she didn't even last an hour before her numbers went bad and they had to start the ECMO again. They decided to try her off the ECMO again on Saturday, and to my surprise, she did very well. She was able to keep her oxygen saturation levels up and her carbon dioxide levels down, with the help of a ventilator, of course. The surgeon removed the ECMO cannulas from her neck Sunday morning.

Brianna seemed to be doing well and they scheduled her hernia repair surgery for Wednesday, October 13. Then on the morning of October 8th, Brianna took a turn for the worse. They couldn't wait any longer, they rushed her into surgery to repair the hernia. After about 2 and a half hours, the surgeon came to tell us that the surgery went well. She told us that Brianna only had about 1/5 of a diaphragm and that her stomach, all of her intestines, her spleen and part of her liver were all up in her chest cavity. They had to use a pretty large gortex patch to fix her hernia. They also had to insert a second chest tube, this one into the left side of her chest.

The first couple of days after her surgery were very scary. She had to be placed back on an oscillator and nitric oxide. They started giving her steroids to try to help her lungs grow and strengthen. Many of the doctors and nurses have now told me that they really didn't think that Brianna would make it through that first night. But, she did, and things finally started to go uphill from there.

Brianna was put back onto a regular ventilator, her right chest tube was removed and they started to feed her though a feeding tube. I was able to hold her for the first time on October 17th, she was already 4 weeks old. Her lungs started to grow very rapidly and soon her left lung was as big as her right lung and they were both functioning very well. Her left chest tube was removed on October 20th. They tried to take her off of the ventilator on the 21st, but she was working to hard to breathe on her own and her respiratory rate was very high so they had to reintubate her. She was tried off again on the 28th and this time she did very well and was able to stay off. She now just had a nasal cannula. The doctors prepared me for all of the many feeding problems that they anticipated Brianna to have. They said she would have a lot of reflux problems and spit up a lot. They also said that she would have a hard time learning to feed from a bottle. But, Brianna did not show any signs of reflux and on November 2, she was bottle fed for the first time and took right to it like a pro! Her feeding tube was removed the following day.

On November 8th, Brianna's nasal cannula was removed and she was breathing all by herself! After 8 very scary weeks, we were finally able to bring our baby girl home on November 14th! She had to have one more surgery on May 20, 2005 to repair a hernia in her muscle where the original surgery had been done, but she did so well though that, we were released the next day. Brianna is now almost 2 years old and doing great! The scars will always remain, but that's alright because they remind me everyday of just how lucky we are to have her here.

Thank you very much for the CHERUBS website. It has been very informative and has helped us get through the hardest time of our lives! I hope my story can inspire and give hope to other parents who have or are expecting a child with CDH


Written by Brianna’s mom, Kelly Roberts (Colorado)
2006