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.
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.
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.
I (Trent) thought I'd add a few words here on how the treatment worked from my perspective.
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.
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.
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.