It's only eight months down the track but we got around to posting a summary of Mary's experience with the immunoglobulin treatment for neonatal hemochromatosis. The theory behind the treatment can be found here.
My Experience
I received a product called Sandoglobulin, at a dose rate of 1g per kg of my body weight. The high dosages and slow infusion rate combined to make a long and slow infusion (around 10 hours each week). I am of average build and 168cm or 5'6''. When my treatments first started in week 18 of the pregnancy I weighed approximately 68kgs or 150 lbs. Over the pregnancy I put on about 8 kgs or 18 lbs. This meant that my dosage increased from 11 bottles of the 6g of IVg to 12 bottles.Over the course of the treatments the administration of the infusion caused much discussion between ourselves, our obstetrician, our haematologist and the oncology nurses. Both the infusion rate and the infusion volume were sources of differences of opinion. This had a large impact on the time taken to have the infusion.
For my own personal wellbeing, I found it very important to know what time the infusion would start and what time it would finish. What I saw as unnecessary delays and setbacks were both upsetting and extremely frustrating, (eg at the end of each bottle I would wait up to five minutes for a nurse to become available to add an extra 10ml to the infusion, failure of the solution to be dissolved in preparation for the administration causing the infusion to be paused). Having said that, overall the staff and nurses in the oncology department were fantastic and without their support it would have been almost impossible to get through all of the treatments.
After about eight treatments I was really struggling with the treatment process. The time was varying every week, I was suffering quite badly from dehydration caused by the treatment, this included headaches, the infusions made me feel very bloated and I could not see an end in sight for the treatments. After the eighth treatment, I even ended up at the labour ward following the treatment as my chest was extremely tight and I was having really strong tightenings which severely impacted my ability to move. I received some anti-inflammatory drug and was fine after a few days of discomfort.
The ninth treatment passed without incident, however my tenth treatment had to be stopped after 10 bottles. I was very tight chested and suffered a reasonably mild asthma attack. I had childhood asthma and so was very familiar with the sensation and able to help with diagnosis of what was happening. The infusion was stopped; I received a diuretic to reduce fluid and received a dosage of ventalin via ventilation. This relieved the asthma and the infusion was restarted and completed without further incident.
The asthma started after less than 7 bottles in the next treatment. This time I received some hydrocortisone (a safe drug for use in pregnancy) and some more ventalin. Once again this controlled the asthma and the infusion was restarted and completed without further incident.
From the eleventh treatment to the final treatment (21st) I have received pre-medication of hydra-cortisone and ventatlin. This has enabled me to receive the treatment without incident. It is also interesting to note that since I have been receiving the pre-medication I have not suffered headaches and the dehydration has been controllable.
Having spent so much time at the hospital I was pretty glad to have the final treatment. The Volunteers who visited me every week were my saviours and I have to admit that if it wasn’t for them, I am not sure I would have lasted. In fact I think that their company was even better than my own family and friends as they had no personal involvement in the situation. They were wonderful.
Postscript
Harry is now eight months old. I would undergo this treatment again in a flash!As it turned out the 21 days I spent undergoing the treatment is the reason that Harry is alive today. It was hard at the time, but I remained focussed and am so glad that we were given the opportunity to receive it.
I thank everyone involved and think of you all very often.
Mary
I (Trent) thought I'd add a few words here on how the treatment worked from my perspective.
Sandoglobulin immunoglobulin
Immunoglobulin comes in a number of forms or brands. Mary was administered Sandoglobulin. You can find a fair amount of information on Sandogloblulin on the net, but perhaps the more common brand is Intragam, which I think has been used by the majority of women who've been involved in Dr Whitington's program (though I'm not 100% sure).
I'm also not 100% sure on the difference in the products, but the obvious difference is that for approximately the same does Sandoglobulin will take over twice as long as Intragam! This is pretty much based on the concentrations of IVIg in the product and the safe infusion rates.In our case, the Sandoglobulin arrived as a 6g crystal in a bottle, which was diluted to 100mL, making a 6% solution. This was then administered by drip at a rate of 150mL per hour.
You can do the math… Mary weighed a bit over 70kg during the pregnancy – so at a dose of 1g/1kg, she required around 70g of IVIg or 11-12 bottles – i.e. approx 1100-1200mL of solution – and finally at the drip rate of 150mL – each treatment session should take about 8h! Wrong!
One of the things Mary struggled with continuously was the length of time the treatment took, generally about 10h. The extra 2h came about for a few reasons: extra time to ramp up to maximum dose rates, flushing the infusion lines with saline for 10min at the beginning and end of the session, sessions didn't always start on time, and finally (frustratingly) the fact that the bags of saline used to dilute the Sandoglobulin on average seemed to contain an extra 5-10mL. Frustrating because this 5-10mL in each bottle amounted to an additional hour or so over the day. In the end Mary was somehow able to put this behind her and decided that worrying about the time was pretty much a waste of time.
Getting through the treatments
Apart from making sure you're relaxed Mary found a few other things that helped during the treatment:
- Heatpacks. The drip is often cold below room temperature and can feel really cold going up the arm. Some of the other women involved in the study mentioned that the bottles were warmed up in hands before it was administered. Making sure the fluid or your arm isn't cold helps.
- Blankets (as above)
- Putting your feed up, but not necessarily reclining in the chair. As you can imagine by the time week 36 of pregnancy rolls around it's hard to get comfortable, let alone trying to be comfortable sitting in the same place for 10h!
- Visitors! the help break up the day.
- Crosswords – unfortunately only when the drip is in your non writing hand.
Reactions
When you read the list of potential side effects from Sandoglobulin it sounds scary. The doctors assured us that the risks were low, similar to any blood transfusion where the transmission of infections (unknown forms of hepatitis) is possible. However the risks are even lower for highly processed blood products such as Sandoglobulin. Mary did however have a few reactions (though we can't say for sure whether they were a direct result of the treatment)
- After the 2nd session Mary developed a small rash on her hands which went away after a week and never came back.
- Headaches. These were pretty consistent. The treatments were on Thursdays and generally by the Friday afternoon Mary developed a headache.
- Tightness and asthma. Mary had an asthma like reaction at about week 30, and then again the following week. In both cases the treatment was stopped for about 1/2h before starting again after things settled down. After the second week and discussing it with the doctors it was decided to give Mary a hydrocortisone pre-med (100mL) before starting the treatment. This made a huge difference, makingn getting through the treatments easier.
Oncology
The other interesting thing about the treatment delivery was that it was administered in the oncology department of the hospital. In some ways Mary was a good news story for the nurses and patients, but it's not easy and at times was confronting.
The best thing about the treatment being administered in oncology was the people. The nursing staff were great and so to were the volunteers, who kept Mary's spirits up through the treatments.
July 17, 2006 at 3:52 pm
Hi, my sons Aidan and Patrick both had NH — Aidan had a liver transplant and Patrick received the IVIg protocol. I did get the headaches but none of the other complications. They gave me benadryl ahead of each dose and it only took 6 hours usually, so I must have been receiving the other kind of immunoglobulin you mentioned. Like you, I think it was so worth the inconvenience though that was not a trifle — we had to drive 2 hours round trip to the hospital for the dose, so it did end up taking the better part of the day. I thought I would just leave a comment since besides my own experience yours is the only one I’ve heard about personally, though I know Dr Whitington now has about 20 babies in his case list. Patrick spent about 3 weeks in the NICU going through iron chelation but is fine now at 3 years old.
July 25, 2006 at 1:09 am
First of all it is so great to read something on the web about NH from a person who has gone through the treatment! We lost our son from NH in 8/04 and it was devastating. Matthew lived for 10 days- long enough for the fantastic doctors at Children’s Hospital in Boston to confirm the NH diagnosis. Sadly, I was told that we likely could not have more children due to the high reocurrance rate. Luckily I am not the type who takes “no” for an answer and after doing some research I came across Dr. Whitington via Alex Knisely at Kings College. To make a long story short, I gave birth to a healthy baby boy in March 06. Owen is doing great and he only spent 1 day in the NICU- the IVIGg worked miracles. Another comment- my OB was able to arrange for me to have my IVIGg treatments in my home and the in-home infusion rate is much faster than in/out patient rates. If you can get your insurance to pay, it’s totally worthwhile. Also, i believe Dr W has at least 34 healthy babies on his list as of 7/06.
August 15, 2007 at 8:45 pm
[…] Hemochromatosis Dr Peter Whitington, who developed the IVIg gestational treatment that Mary underwent, has published another paper. Neonatal Hemochromatosis: A Congenital Alloimmune Hepatitis, Seminars […]
September 1, 2007 at 9:28 pm
[…] are around 1 in 100,000. So, given the cost and huge commitment (read about Mary’s experience here), you’re not going to have this treatment unless there’s a good chance the baby will […]
November 8, 2010 at 9:36 am
I Have lost 2 of My children to NH it was not until after my daughter died that I discovered tha Both my Kids died of the NH.. I am Not 2 1/2 months pregnate and am getting ready to start the IVIG Treatment I am extremly Nervous with this Pregnancy but I have a lot of faith in this Treatment!! Any Advice is appreciated!
November 19, 2010 at 3:26 am
Hi Melissa
I am sorry to hear of your losses. I lost my little girl in September and only today have I found out from the PM that she died of NV. As you can imagine I am devastated to hear the news and now trawling through the interest to find out more. I understand from your post that you are now pregnant again (congratulations!), who do you recommend we see about this condition and our chances in the future, who is your consultant that is helping you with this IVIG treatment, are they in the UK? I am currently under St Mary’s, Paddington and although they are going to get back to me with a referal I am keen to start doing my own research. Thank you so much for your help and good luck with your pregnancy, I would be most keen to keep in touch with you through your journey. All the best Gill x
December 1, 2010 at 12:19 pm
I am In The US Am Am going through the University Of Washington. But the Dr that I have been in contact with about NH Is Dr Peter Whitington. If you google Neonatal Hemochromatosis He has a web page up where you can go and read about what NH is and how it affects the baby and How The IVIG treatment helps prevent the condition you can even E-mail him about it or Susan. It was the best sight for me.. I have been following this for 7 years before I got Pregnate.. Thank you for your best wishes I start treatment in 2 weeks.. I Will keep you posted on how things are going And I would love to try and help you in anyway I Can..
~Melissa~
March 8, 2011 at 6:40 am
Hello,
I lost my first son Cameron at 7 days old in 2000. I then had Luke in 2002 and Nathan in 2004 who were both very ill and were seen by Great Ormond Street Hospita and Kings College Hospital in London. It wasn’t until Nathan was a few weeks old that the IVIG treatment was mentioned to us. I too had this treatment from 18 weeks with my last pregnancy and my youngest son Reece was born in August 2008 with few complications. I am now blessed with 3 beautiful sons and an angel in heaven. If anyone would like to know my experience please let me know. Karen
February 6, 2011 at 8:29 am
Hello Everyone,
I am so happy to have found this blog. My husband and I lost our little girl Grace Kathleen to NH in June 2010. We had already had one child, our son Danny, who was perfectly healthy and were in such shock when Grace was born. I always had a feeling somthing wasn’t right during the pregnancy but all the tests were ok. She was born at 38 weeks and was 5lbs. The doctors knew something was wrong right away. Luckily I am from Chicago so we were diagnosed and sent to Dr. Whitington on day 5 of her 80 day life. Dr. Whitington is an amazing man and tried his best to save our Grace but it was not meant to be.
We are trying to conceive again now and hopefully it will happen soon. I would love to be in touch with you all and hear more about your stories with NH and IVIg treatment.
Support and knowing your not alone is so helpful. Please feel free to email me at obrienlaw@live.com
Bridget
February 26, 2011 at 1:44 pm
Hi Bridget I am in week 24 of my pregnancy and so Far everything is going good.. This pregnancy is so different from my past 2 pregnancy’s.. My 1st treatment was the hardest at 14 weeks it gave me really bad migrains and actually made me pretty ill took me 3 to 4 days to get back on my feet. and now the treatments are going really smoothly and they are now doing ultrasounds every few weeks to check the development of the baby and they have said that so far the baby is looking awsome and the heart rate is good and strong.. I keep prayin that this Treatment works.. I know that they say it has been sucessfull so far but I am still a little worried but I do believe that it is due to my past pregnancy’s.. Dr. Whitington has been amazing at answering all of my questions and communicating with my Dr.s at the University of Washington..
Let me know if I can help you in any ways or answere any kind of questions.. I am truely sorry for your loss If Grace I know its not easy in any means.. I pray that you have peace with in yourselves knowing that everything possible was done for her..
~Melissa~
February 26, 2011 at 7:28 pm
Melissa, Glad to hear that treatment is going ok. Bridget, any luck this month? I have everything crossed for us both!
For those who have come across this message looking for information on NH. I have recently created a Yahoo forum for parents such as us, please join our community at http://health.groups.yahoo.com/group/Neonatal_Hemochromatosis/
Gill
February 27, 2011 at 10:54 am
Hi Melissa and Gill,
Melissa, I am so happy to hear that all is going well with your pregnancy so far and I would definitely like to hear more about your treatment as I will be going through it very soon myself. Gill, to answer your question, yes I am pregnant!! Very very early days just yet so we are excited and nervous. I have appointments set up for next week to get a plan in place. Melissa, what week did you start treatment? I am so glad to hear that it is going smoothly. Hope to keep in touch with you both and can’t wait to support each other through our pregnancy!