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Photo GalleryThis photo gallery is here to share the experiences and the photos of the families and the patients who experienced NH in their lives. These families went through the emotional trauma that NH can cause. These are their stories, in their own words, about facing the future and making the decision to have another child in the future. We especially want to share stories of women who have had an NH baby in the past, and are at high risk of having another NH baby in the future (80%+) but who have used the new treatment (developed by Dr. Peter Whitington) during pregnancy which has allowed them to have a healthy baby. We hope that these stories will inspire others and give them the hope and courage to try this treatment, too, in the hope that they might have a healthy child in the future. If you would like to share your story (and/or photos) of success using this new treatment, please send us your story to: mail@americanhs.org or call us directly at: 407-829-4488 or toll free at: 1-888-655-IRON (4766). Thank you. Sandra Thomas, President, American Hemochromatosis Society
"Hope for the Future" (These are the stories of healthy babies born to parents who have had an NH baby in the past. The babies born to these parents after they had an NH baby, were healthy because they underwent a new medical protocol developed by Dr. Peter Whitington. This protocol offers new hope to parents of NH children around the world.)
Story #1: On June 4, 2005 born
to us was a little angel, Giselle Elizabeth Gugyelka. We had a perfectly
healthy pregnancy with no complications. Her birth was uncomplicated but
within 2 hours after she was born trouble started and she was taken to
the NICU. After 7 days of endless investigations, medications, consultations
she was taken to heaven. We were devastated and had no idea what had taken
her life. After an autopsy was completed she was diagnosed with Neonatal
Hemochromatosis (NH). We are from Canada and no one had ever heard of
this disorder in newborns. Our Neonatologist had searched the Internet
and had found a paper in Lancet written by Dr.Peter Whitington about this
disorder.
Jager Gugyelka Jager Gugyelka
Story #2: Kamryn Jenae Galloway 5/12/2001 – 7/11/2001
Several days after Kamryn was born she had been diagnosed with NH. 9 days after her birth she was on a plane to UCSF. They could help her there and get her a liver transplant. For 6 weeks we traveled back and forth from San Diego to San Francisco . Kamryn never got well enough to get a liver transplant. She lost her battle with NH on July 11, 2001. This was the hardest thing we had ever been through.
Kamryn on her birthday 5/12/01
A couple years later we decided to try to have another child. For some reason we just knew our chances of having a healthy child would be in our favor this time. Not until after I had become pregnant with twins did we find out how serious our situation was. We were told that the twins will have NH. Fortunately we had a great team of doctors who located Dr. Whitington and told us about his research. We immediately got everything in place to begin the therapy. The therapy was successful and our twins, Layla and Mya were born June 1, 2004. We are thankful to all of the wonderful doctors who treated me and the twins. Dr. Whitington will be a part of our lives forever.
Layla and Mya
Kindest Regards, Kathy and Kerry Galloway Update/written on July 3, 2007:
Hi Sandra,
Mya is on the left and Layla
is on the right. Hope you're doing well. Take care, Kathy
Mya & Layla at 3 years old!
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Story #3:
Jonathan and Katelyn I have a daughter Katelyn who is now 6 years old born (25.3.01). The first 4 weeks were constant crying. At five weeks Katelyn's feeds were reduced dramatically to the point she became dehydrated. Upon a visit from the Community Nurse she advised we take Katelyn to hospital. After a Care Flight helicopter ride to Westmead Childrens hospital Katelyn was found to have Supra-Ventricular Tachycardia caused from Wolf Parkingson White Syndrome. Katelyn was on medication for 12 months and has not had a reoccurance. Katelyn's next scan will be at 9 years of age. It is also very good to see that it has not effected her in any way.
Three years later we tryed for another child. Ryan Stephen Jack Mitchell was born (17/12/04). He was cleared of SVT & WPW and sent home with a little Jaundice. We had a wonderful Christmas with Ryan and he did not show any signs of what was in stall. When he was 20 days old the Jaundice was not getting any better and he was having trouble waking for his feeds. We started to worry as we had gone through the reduced feeds with Katelyn and we started to think about whether Ryan was hydrated. The Community Nurse arranged for the Pediatrician at the hospital to have a look at him. At the hospital the Doctor took some blood and said he may have to go under lights. He sent me home and said he will ring me in an hour with results. The doctor called and ask me to get to Westmead Children's Hospital urgently. We got to the Westmead Hospital and doctor's did more blood test to try and find what was wrong. At 21 days old Ryan went into a mini coma and did not wake for 4 days. After daily blood test it was found that he had Neonatal Hemochromatosis (NH) and there was nothing they could do but support him. Ryan passed away 26 days old at 8.55pm on the 12/1/2005. The loss of Ryan was devastating to Stephen, Katelyn & I.
Ryan Stephen Jack Mitchell At the time of Ryan's passing the Professor looking after Ryan suggested some tests to be completed to confirm their diagnosis. A biopsy was taken of Ryan's liver. Six month's we received the results back from the liver biopsy. It was not genetic and it was confirmed NH. The Professor told us about Dr. Whitington's study and advised us who to see next to be part of the study. Twelve months later we were approved to have Immune Globulin. This was very exciting as it now gave us the opportunity to have another child.
Ryan's brother, Jonathan Mitchell In July 2006 we had great news that I was pregnant. We started the Immune Globulin at 18 week's. I spent 8 hours every Wednesday until the 36th week and I was induced at 36.6 weeks. Jonathan was born (23.4.07) a Beautiful 3.5kg (7.7pounds)and 54cm long. Jonathan's ferritin & AST were slightly elevated but with Vitamin E injections he was fine. We were sent home with no medication after six day's. Jonathan is now 23 weeks and is going great. A very happy boy and a very happy family.
Thanks, Lynnette ************************************************************************************ Story #4:
The Sevcik Twins Sandra, Hi, I wrote to you early this year with a memorial for our daughter, Kate Sevcik. At the time we were expecting, and since have had healthy twins (a boy and a girl) after following Dr. Whitington's protocol of Ivig starting at week 18. We would love to post our "success story" on your website to help provide hope to others. Here it is, plus a few pictures. Thanks so much! Joe and Melanie Sevcik
Thanksgiving weekend of 2006 we lost our daughter Kate to NH. We didn't know it was NH until after we learned we were expecting again. Initially, this was very stressful as we had to prepare ourselves for the worst…again. We contacted Dr. Whitington in Chicago and felt better about the prognosis but still had so many questions. Then we learned we were expecting not one but two babies. We started preparing to get insurance coverage, one of our biggest concerns since the cost for IVIg was so high and we could not have afforded it out of pocket. There was much relief when we learned the IVIg treatments would be covered. The first treatment was done in the hospital but all subsequent treatments were done at home. The first one was rough because they started the infusion at too quick a rate and even though they slowed it down, the effects were already taking place. I felt as though I had a very bad flu…headaches, nausea, vomiting, and severe body aches. It took about 3 full days after to recover. With two other small children at home to take care of, I prayed this would not be an every week occurance but we prepared for the worst. The following week I had a home health nurse come to give the infusion and she took steps to alleviate the rough side effects. I felt fine the next day, and that continued through all of the treatments. I really loved my nurse and it was a great experience. After not being able to do anything for Kate, I at least felt that I was doing something to help these babies. On August 20, 2007 they were born at 34 weeks gestation due to problems with me not related to NH (gestational thrombocytopenia). Their liver tests came back great. They spent 9 days in the hospital on the gain and grow plan before bringing them home on no medications.
After we learned Kate had NH, I don't know that we would have had more children had I not already been pregnant. I am so glad that decision was out of our hands because the treatment was not difficult at all and the outcome has been absolutely wonderful! We are so grateful to Dr. Whitington for all the research he has done on NH and his help to get the treatment I needed as well as guiding the perinatologists and neonatologists through my pregnancy and the babies' first days.
The Sevcik Twins
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Story #5: "Our little light in the dark night..."
Trinidad--Born October 2002 Dear Sandra:
When I wrote to you in 2001, you helped me to contact Dr. Knisely and then Dr. Whitington. I have four children now, Lia Montserrat, 10 years old; Jeremías Agustin, 9 years old; Ulises Nicolás, 6 years old; then Candelaria was born on February 1st , 2001. She lived only 30 hours—it was very bad, and she died on February 2 nd . We were all so sad, because of this loss in our family. When I watched my daughter or my husband cry, the pain increased a lot. My child, Lía, said: I would like to die so that I could stay with my little brother...” As a mother, I didn't know how to answer her. I felt that God was not looking at our problems.... but I prayed more, until the little light in the dark night appeared: I found your web site ( www.neonatalhemochromatosis.org ) and then your help, and the Dr. Knisely and Dr. Whitington, too. My obstetrician stayed with me and helped me with the new treatment by Dr. Whitington. In October 2002, Trinidad was born! Today, we all remember our little Candelaria, but Trinidad erased the bitter taste. Today, we are all grateful to God for this miracle and you and the doctors, of course. Some people might not understand why I would seek another baby since I already have three other healthy children, but I felt that I wanted to have another child after losing my little Candelaria. It was a way to honor her life, however short it might have been, and to give another soul a chance at life. This is my story. Maria Beatriz Montico
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This site was last updated 4/27/09 |
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