Information on our experience with Neonatal Hemochromatosis (NH) can be found at the following links on our blog site:
- Our Story (describes Ellen’s life from Trent and Mary’s point of view )
- Summary of Treatment (includes some comments from others who have also received the IVIg treatment)
- Posts on NH
NH is a pretty rare disease and so we have also listed some links below to useful websites.
- Children’s Memorial Hospital (This site describes the gestational treatment that Mary had with Harry)
- neonatalhemochromatosis.org Useful site with links to further information and stories from other families.
- teytesmum.com Andrew and Stacey contacted us a while back after they tragically lost their son Teyte to NH. They have now set up a website that tells their story. Hopefully Dr Whitington’s treatment may help them have a healthy child in the future.
Finally, we have received quite a few emails from families who have lost children to NH saying that being able to read our story has helped. It has been really touching to read these stories of grief, sadness, loss and hope. If you would like to leave your story as a reply/comment below, I’m sure the families who come across NH in the future will be grateful.
January 9, 2007 at 7:18 am
Hi, I found this web site in my search for information on NH. My husbands half brother and sister-in-law, Amanda, have lost two children to NH. My husband and I recently found out that we are pregnant, Amanda is convinced that our baby is going to have NH too and is worrying the whole family with this. I dont know too much information on this disease. What are the chances my baby would end up with NH.
January 9, 2007 at 1:50 pm
Sally,
There is no evidence to suggest that NH is passed on through families. So the chances of your baby ending up with NH are very small (or put another way – no greater than anyone else you might meet in the street).
The theory that seems to be gaining most acceptance is that it is an alloimmune disease, where the mother develops antibodies against the foetus, affecting the foetus’ development. The reasons why this occurs are not fully understood but it does not appear to be genetic.
Hope this helps.
Trent
March 23, 2007 at 10:55 am
I Googled for something completely different, but found your page…and have to say thanks. nice read….
July 22, 2008 at 12:57 pm
I just had to share my story with NH. My son Jax is 8years old now and was diagnosed with NH at 7 days old. We had to fly to Illinois to see Dr Whitington and his amazing team. Jax received his liver transplant at exactly 21 days old. At the time there was tons of research going on but no answers. Jax is a beautiful, amazing, healthy little boy with LOTS of energy and filled with so much love. I believe to this day that prayer and faith is what kept him alive all that time waiting for the perfect liver. I pray for all of the families that ever have to experience such heart ache….but if Jax gives any one just a little hope…then it was worth sharing his story. You are all in my heart~ Heather
January 24, 2009 at 1:12 pm
My name is Carrie. My sister had a baby, Christopher Jack was born on October 28,2008 and he passed away on December 10,2009. We still have no answers as to why Christopher passed away. One of the doctors performing the autopsy contacted my sister today and said that it may have been NH. So of course I had to look it up and I came across your website. I have many questions. I would like to explain what happened to Christopher during his time here, and ask if you can please let me know if it sounds at all framilier as to what you experienced. Christopher was born and a few hours later he was admitted to the NICU unit. They thought that he had GBH so they gave him antibiotics to take care of it. He had a low platlet count, high gluclose levels, ademia, very large testicles, and jaudice which they prescribed Phonbaritol for. The doctors had no clue what was going on in his little body or how they could help him. He was in the hospital for about 4
weeks. Then he was released to the hospital even though they had no idea what was wrong with him. They kept saying that it was a metabolic disorder. My sister trusting that they were medical professional took him home. He also had very dark urine. On the 9th day being home she took him to the pediatrician he ran tests. The tests came back the next day with low sodium levels. He admitted him right away on the 10th day. He was in the hospital, the day after he was admitted he started filling with fluid. He wasn’t producing any urine or stool. They had a very hard time administering IVs because of his veins. He went into cardiac arrest a few times. On the 3rd day in the hospital after his blood pressure kept dropping my sister decided to let him go. They ran a bunch of tests and couldn’t come up with anything. Can you please let me know if this sounds at all similar to what you experienced. Thank you!
February 15, 2009 at 12:45 am
Hi this is Carrie, I left the last post. My sister’s baby autopsy came back and it was NH. Thank you for this website.
February 16, 2009 at 9:05 am
hi,thankyou for your website.I am from Leeds uk.I have lost 2 babys to NH.Charlotte died 14days old 27 Apr 2002.We never at the time knew why she died only that it was liver failure.Then 4th june 2008 my baby Ruby died 3 days old,we knew a few hours after birth that something was wrong but 24hrs later we knew she had liver failure and the docs started to treat her for NH as it was then an obvious cause.The post mortem confirmed NH had taken my little girl.
It is such a tradgic and un common thing although i do think it is much more common than we think and lots of babies are not recognised as having this when there short lives end.
i fell preg again but sadly miscarried at 10 weeks,i planned to have the ivig treatment.
I do have 2 healthy children age 9 and 6.My girl sophie was born in between charlotte and ruby and proves miracles can happen.
I would love to raise much more awareness of NH and if anyone would like to email me i would be more than happy.
dawn (uk).
March 23, 2009 at 9:25 am
Makenna’s story begins on October 22, 2008 at 8:00 pm when she was born at Dupont Hospital. On October 23, Makenna was sent to the Dupont Hospital NICU. She was admitted for a low temperature, prolonged bleeding from her heel stick, and a low platelet count. After observation, they thought that she had an infection. We originally thought she would be in NICU for only 7 days.
Before the seven days were completed, doctors found some more abnormalities in her blood work. We were told that there could be a liver disease that hadn’t been diagnosed yet. After several blood draws and phone calls to other doctors we still had no answers. We only knew that there could be some liver issues that needed to be explored. Our wonderful doctor and nurses at Dupont decided that Makenna should be transported to Riley in Indianapolis. They weren’t giving up on Makenna, they just wanted the best care for her.
On October 30, Makenna was transported by ambulance to Methodist Hospital in Indianapolis. They wanted us at Riley, but their NICU was full. Methodist was the next best thing. Makenna would still receive the same care. We arrived in Indianapolis at 10:30 pm. After several hours, we finally got a chance to see Makenna. We immediately were greeted by doctors and nurses whom would be caring for Makenna. Our first night was overwhelming and very tiring. After a few hours of rest we were headed back to the hospital.
On Makenna’s first day at Methodist it was decided that she would need a more permanent line for her IV medications and blood draws. It was decided to place a temporary port on her left side. We were very nervous and worried about this procedure. It is treated like a surgery. We didn’t like the thought of Makenna being intubated and sedated. She came through everything just fine. The line was placed successfully with no complications. This was just the first of many things that Makenna would endure.
In Makenna’s first day we met many more doctors and nurses that would care for Makenna. After spending a week at Methodist there was finally a spot open at Riley. We were told on the morning of November 6 that Makenna would be transported to Riley that afternoon. We were sad that we would be leaving our nurses and doctors at Methodist.
We moved to Riley that afternoon around lunch time. Once there we met more doctors and nurses that would be caring for Makenna. The doctors (entire teams of them) would come to see Makenna on a daily basis to check her labs and to examine her. We spent a lot of time waiting for test results and conclusions to be made about what was happening with Makenna.
At different points in our stays in the hospitals, we were most likely looking at diagnosing Makenna with either Tyrosinemia type I, a Mitochondrial disease, or a rare gestational disorder called Neonatal Hemochromatosis. The only definitive thing we knew was that Makenna was in a battle with her liver as it was failing due to ’something’.
During our time at Riley, Makenna underwent a double exchange blood transfusion. This is a process to remove as much of Makenna’s blood and replace it with new donor blood. The procedure itself only took 4 hours but we had to wait 11 hours from the start of her prep work until it was finished. This procedure was done in hopes that we could remove the ‘bad’ blood and replace it with blood that would allow her liver to have a break and start to heal. The procedure went well and her body accepted the new blood and her lab results improved for a short day.
Shortly after the transfusion, Makenna got an infection. This infection would prove to be very devastating for her recovery.
After 3 weeks at Riley, and Negative results for Tyrosinemia and mitochondrial diseases, it was decided that Makenna was too sick to go on without a liver transplant.
We then were transferred to St. Louis Children’s Hospital. Upon arrival, Makenna had a dangerously low blood pressure which kept her off the transplant list because she was on 3 blood pressure meds. She was able to stabilize her blood pressure and after the weekend, she was no longer on these meds. At this time, she was listed at one of the top spots in the entire nation. This stay on the list would be short. After her second MRI, it was revealed she had suffered severe brain damage and was bleeding in her brain. This would take her off the list and out of our lives but not our memories or hearts.
After 1 week at Dupont, 1 week at Methodist, 3 weeks at Riley and 1 week at Children’s, Makenna passed away at 42 days old on Dec. 3, 2008 at 1pm (Eastern).
Autopsy results indicate Neonatal Hemochromatosis as the cause of liver failure.
She will forever be a part of us as we will remember, on a daily basis, the constant fight and determination she showed the doctors and nurses as she made everyone in her life smile every time they saw her.
We would like to thank all the Doctors, Nurses and support staff that took care of Makenna. We at no time ever doubted they were doing the best they could to treat and take care of our precious little baby girl. Thank you to you all! Please continue to touch and help young children each and every day.
July 19, 2009 at 9:11 am
Dear Friends,
Your website is a wonderful treasure for anyone affected by or interested in Neonatal Hemochromatosis (NH). I have enjoyed reading about your experiences, and extend my deepest sympathy on your loss and my sincere joy at the successes.
As you probably know, your story has been on our home page (www.neonatalhemochromatosis.org) for years now, and I think your story is an excellent example of how the new treatment for women can help them have a healthy child after losing a child to NH in the past.
Keep on posting updates on your family, which is indeed an inspiration to others facing NH…
Sincerely,
Sandra Thomas, President
American Hemochromatosis Society
(www.americanhs.org)
and
Neonatal Hemochromatosis Information Center
(www.neonatalhemochromatosis.org)