Our 1st Annual CDH Awareness Blood Drive

The Cold-Hard Facts:
1. Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year)
2. The cause of CDH is not yet known.
3. CDH occurs when the diaphragm fails to form or to close totally and an opening allows abdominal organs into the chest cavity – This inhibits lung growth
4. Roughly 50% of babies born with CDH do not survive
5. CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little
    research being done and virtually no media coverage
6. Jack received approximately 25 units of blood in his first 2 weeks of life to keep him
Did you know about CDH before it effected your child, your grandchild, your friend or your neighbor? Most people have not and that is why we are taking this opportunity to bring awareness to this often fatal birth defect. And what better way than to help others by collecting much needed blood donations to help people in need in our community.
Holy Trinity and Team Jack are teaming up to host a blood drive to raise awareness for CDH. The drive will be held in a donor bus located in the parking lot of the Holy Trinity Church beginning at noon on August 4, 2012. Appointments are taken every 15 minutes but walk-ins are also welcome. Double red cell donation is also an option. Please inform me if this is something you are interested in scheduling or want more information.
After your donation, stick around for some fun, music and corn-on-the-cob at the Holy Trinity Festival. All donors will receive a $2.00 credit towards kids games at the festival which officially starts at 5pm. Saturday’s band is 3Day Rule with Final order on Friday and Ooh LaLa on Sunday. Be sure to check them out.
If you aren’t the blood donation type or aren’t eligible, don’t worry. It’s not for everyone. But come on over and raise awareness with a good time.
The Quick and Dirty:
CDH Awareness Blood Drive                                Holy Trinity Festival
August 4, 2012                                                       August 3-5 2012
Prior to the Holy Trinity Festival                             2420 Drex Avenue
2420 Drex Avenue                                                 Cincinnati, OH 45212
Cincinnati, OH 45212                                             Friday 6pm – midnight with Final Order
Noon- 6:00pm                                                        Saturday 5pm – midnight with 3Day Rule
To schedule an appoitnment:                                Sunday 3pm – 9pm with Ooh LaLa
Kaytee at 513-607-4011 OR
See you there!


8 thoughts on “Our 1st Annual CDH Awareness Blood Drive

    • I agree. I think it will really help get more awareness about CDH, bring in a lot of blood donations for the community and be a really fun backdrop for a great cause.

  1. Oh, I wish I would have known about the blood drive! My daughter, Julia Noelle Faith Hartung was born with right-sided CDH on 4/8/10 at Cinti Children’s. She was placed on ECMO within an hour. She did come off of ECMO after 3 weeks, but heartbreakingly, she chose wings over feet on 5/3/10. I would love to help at next year’s blood drive. We live in Fort Thomas, KY – right across the Big Mac bridge. My miracle, Julia, lives in heaven, but I would love to meet yours some day. We have 3 other children – Jenna, Joshua, and Jiliana.

    • Jullianne, I am sorry to hear about Julia. I am so grateful that Jack chose feet. But I am happy that Julia has led you in a position to help others in her position. I will certainly keep you updated on next year’s blood drive. This was a little quick and unorganized on my part since I didn’t know what to expect. But it was well received so I will make it much bigger next year. I am also looking for other events to take part in/plan throughout the year, but don’t have quite a direction as of now. Please let me know if you have any insight and I will keep you updated as well. I live in Cincinnati and work in Erlanger so we are practically neighbors. It’s funny how CDH brings people together.

  2. I stared at that ECMO machine for 3 weeks, loving and hating it at the same time. It gave Julia a fighting chance but as each day passed, I wanted nothing more than to see it wheeled out and her surviving on her own. I knew then how very important it is to donate blood and do so when I can. Even though she chose wings after fighting so hard, that machine which required all that blood, gave me three weeks and three days with her that I will cherish forever. My heart aches every day for Julia, but I’m happy finding the stories of those that have survived like Jack. Keep in touch and I look forward to helping out! My brother-in-law and sister-in-law live in Norwood and I think they were planning to go to the festival that night. It is truly a small world, even when you feel like you are the only one you know that has heard of CDH!

    • I know exactly how you felt with ECMO. I started to resent it after the two weeks that Jack was on it. When it was wheeled away, we celebrated. Then we wanted it back because Jack didn’t do so hot off ECMO for the first couple days. There were a lot of ‘good byes’ the first couple days. I couldn’t imagine loosing a baby. Especially after such a valiant fight.

      On a lighter note, who is your brother and sister-in-law? My husband grew up in Norwood and went to HT church and affiliated schools.I lived there for a couple years too. Maybe we know them. I will keep you updated with CDH events that I hear about in the area. I am certainly looking to get more involved in the awareness movement.

      • Justin and Cindy Hartung. They moved to Norwood about 5 or 6 years ago and live on Catherine Avenue.

        Jack is a strong little man and my heart finds comfort in success stories like yours. Although I will never get over losing Julia, she is still very precious part of our life and always will be. My oldest daughter was 6 and my son had just turned 3 when she was born. We tried to include them in her life as much as possible. They have very vivid memories of her and we try to keep those memories alive. Jiliana was born one year after Julia (Julia and Jiliana actually had the same due date one year apart). I like to think that Jiliana is Julia’s gift to us. Julia is my faith and Jiliana is my hope.

        Thanks for writing. Our stories didn’t take the same path, but it’s good to talk to others that have traveled down that scary road. There has been light at the end for both of us.

        I am also following a blog of a baby currently at Cinti Children’s. She has right sided CDH and came off ECMO a little over a week ago. I believe the family is from northern Ohio. Do you know of other families in the Cincinnati area?

      • I do, I am Facebook friends with a group of parents (of survivors and angels) that all were effected by CDH and most are in the area of close. One is Bev Luken who is involved with some local events. They recently had a summer picnic but we were unable to go since Jack had a virus and spent that weekend in the hospital. All the other people that I have talked to from the area are people I was introduced to on FB from Bev. I also still talk to the other CDH survivor family that was a Children’s when we were there. Jack and their son are one month apart.

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