Important Study on DPA in Preventing ROP

When Elliot was born we were scared about what would happen. We knew he would be early but we had no way of knowing how early. We found out about his failing umbilical cord at 25 weeks so for the next 4 weeks until he was born I tortured myself by researching the effects and problems of prematurity. I had a driving obsession with the research on prematurity. With every new revelation I prayed to God that Elliot would be spared from all of these problems. One problem stood out in my mind - ROP as it is commonly called or Retinopathy of Prematurity. I worried that Elliot would be blind.

What happened to us next was a miracle and I feel duty bound to share it with you so that you will know there are things that can be done to eradicate this horrible disease. But to make it happen we have to do something. We cannot just sit around waiting for someone else to do it for us! The time to act is now. To drive this point home I now share our story with you -

When Elliot came at 29 weeks weighing only 1 pound 12 ounces my fears that he would be blind grew more intense until Dr. Robert Christensen walked into my daughters room the day Elliot was born. Dr. Christensen is a perinatologist at McKay Dee Hospital in Ogden, Utah where Elliot was born. The news he brought with him was a direct answer to my prayers. Dr. Christensen explained that he was conducting a study on a medication that would significantly reduce the risks of ROP in premature babies. He told us that this drug, D-penicillamine, had been used on premature infants in Europe with a 98% success rate and he had been working to replicate the study in the US. The FDA had given him approval for the drug to be tested on 5 infants. Elliot was to be the 5th infant in the study. To receive a copy of the study click here and I will send you a copy. I believe that Elliot sees today because of the gift that was given to us by Dr. Christensen. What are the odds that Elliot would be born at this hospital at this time - just in time to be the last baby in this study? Was this a coincidence - I think not!!!

I am not doctor and I cannot talk to you about this from a doctors perspective, but I can tell you what I know from a Grandmother's perspective. And I KNOW this drug saved Elliot's sight. I am convinced of it. When he was born he struggled to breathe. He was on a two kinds of ventilators, vapotherm, canula and then he went home on oxygen and monitors for an additional 8 weeks. In other words, he was on lots of oxygen for a long time. We used to joke that he would graduate from high school with a canula - it took him so long to be able to breathe on his own!

I have been researching the studies of DPA to prevent ROP on the internet. The things that I read and the things that Dr. Christensen shared with us are stunning. In the studies performed in Hungry 30 years ago it prevented ROP 98% of the time!! This study was done on larger prematures. Dr. Christensen's team studied DPA on smaller prematures. In smaller prematures the incidents of ROP is 60% so more than half will develop some form of ROP. In the study the incidents of ROP was reduced to 21%. With more studies these doctors believe they can reduce that number even further.

Recently I contacted Dr. Christensen to ask him how his research is going. He told me that they are at a stand still. They need more funding to do further studies. His team completed the first studies in 2005-2006. They were able to do two rounds with 5 babies in the preliminary study to see if it was safe (which Elliot was a part of) and 10 more babies to see if there is any merit to their theories. They found that these studies have merit and are very promising but sadly the program has run out of money. They need $60,000 to complete Phase II of the study and $500,000 to do a wide spread multi-institutional study. If you are interested in making donations to push these studies through please send an email to Brooke Gibson at McKay Dee Hospital. Donations of any amount will be appreciated.

I would like to share parts of some of the emails I have received from Dr. Christensen and Faith Smith, RN who are involved with this very important project:

From Dr. Christensen -
I am attaching a publication for you, from the Journal of Perinatology earlier this year. In this paper we reported our study results. As you see, we noted remarkable success with this prevention scheme. Before this idea can go further, more studies are needed, involving multiple hospitals. We have worked hard to find funding for such studies, but thus far we have been unsuccessful. Our foundation here at McKay-Dee is making some strides, and we are fortunate to have a tireless and extremely dedicated colleague in Oklahoma (Faith Smith, RN) who is our best supporter.

From Faith Smith, RN -
I am so happy your grandson has good vision. We can help the Utah doctors by raising money. $60,000 is what they need for Phase II DPA ROP to continue. $500,000 would launch multicentered trial. We have had difficulty finding funding sources to keep project from halting...A special account has already been created. As you find persons to donate, help them with talking with Brooke and then she will take care of rest. As the dollar amount is enough, the doctors are waiting anxiously in the wings to begin immediately. I think you could put together small or large fund raisers around your home to bring awareness that a voice to prevent ROP needs to be heard...Use Elliot's miracle of sight to teach how DPA can save our precious preemies from disability and blindness. When you are talking about DPA, ROP happens usually about 60% of the time and in DPA study it happened only 21%. With a little more research, I believe that number will continue to decrease. In larger preemies 30 years ago in Hungary, it was preventing about 98% of ROP. There have never been any side effect in premature infants using DPA..

I too have a testimony that DPA is to save premature infants from blindness. Heavenly Father has helped me to introduce Lajos Lakatos MD, whom discovered DPA prevents ROP over 35 years ago, to Dr Christensen and Dr. Richards in 2004. These doctors are truly angels, and I have also been telling them this for a few years. All we need is at least to get Phase II up and running again, then multicentered trial and DPA will go global to prevent ROP. In 2004, I knew I had to bring Dr. Lakatos to the US to get his work duplicated to help prevent ROP. I scheduled a few lectures for Dr. Lakatos around the US with the last stop Salt Lake City, Utah.

I wanted you to hear them tell you about their important work in their own words!! These men and women are amazing!!! They are doing an important work and they need our help!

For more information on DPA in preventing ROP go to these websites -

D-Penicillamine for preventing retinopathy of prematurity in preterm infants

An international replication, and the need for long term follow up studies - This is what Dr. Christensen is trying to do!!

Retinopathy of Prematurity - American Ophthalmological Society

The ROP Foundation - Helping Premature Children and Babies See a Brighter Future

American Academy of Pedeatrics


Journal of Perinatology

As you can see all of these studies say the same thing - more studies need to be done!!! Dr. Christensen and his team stand ready to do the needed testing! All they need is the funding. If you are interested in helping with this important work contact me or Brooke Gibson


This medication holds a bright promise for these smallest of babies. Please help! Elliot was blessed by DPA we want to share the blessing!
(Photo courtesy of Jill Martin)