Angie’s Story

IMG_5424After a difficult pregnancy, Angelina was born a month early, a few weeks before Christmas in 2008. She was small, but apart from some feeding difficulties due to her being premature, she did very well. She soon developed severe “colic” but otherwise was still healthy, until about 5 months old, when I stopped breastfeeding her and returned to work. Soon after this, she started getting episodes of bronchiolitis, ear infections, throat infections and eye infections. Her eyes were almost constantly infected, and we would just finish one round of antibiotic drops, but a day or two later the infection would be back. By 8 months old we were told she needed grommets, and a month later she was admitted to hospital with pneumonia. I started asking our paediatrician if it was normal for a child to be ill so much, especially since she did not attend crèche. I was told not to worry, it was probably because she was a bit premature, and because she was exposed to her brother who attended nursery school (even though he was not sick). However, I insisted that I did not think it was normal, and so the doctor tested her immunoglobulin levels.

Angelina’s IgG was very low, and her IgA was also low. At the time Polygam was completely out of stock, and she was given an intramuscular injection of immunoglobulin. However, the doctor did not seem to think that these tests were significant, and did not suggest and further tests or treatment. When she was sick again a month later I then took her to a different paediatrician who did further testing. By 16 months her ears were so bad she needed a second set of grommets and she came down with a severe pneumonia, followed by 2 more bouts of pneumonia in the following 4 months. We were also having significant problems with her eating and drinking at this stage, and she had stopped gaining weight altogether. We were sent to various specialists, including a cardiologist, to rule out cardiac defects as she has a heart murmur. She was started on prophylactic antibiotics and the medical aid agreed to pay for 3 IVIG treatments. However, these were given 6 weeks apart, and so she continued to get sick in between treatments. We still did not know exactly why our little girl was so sick.

The month before she turned 2 she was diagnosed with TB, and we were feeling completely desperate. But we thought perhaps if we treated the TB she would start improving – she did not. In the next 4 months she was admitted another 3 times. Our medical aid then agreed to pay for 6 months worth of monthly IVIG treatments. She finally started getting a little stronger, and putting on some weight, and despite still getting infections, was not landing in hospital. After the 6 months of IVIG we then had a major battle on our hands with our medical aid who did not want to renew the authorization – we felt so helpless! As we thought would happen, Angelina got sick while waiting for authorisation and had to be admitted for the first time since starting the monthly IVIG. I reported our medical aid to the Council for Medical Schemes, as well as on the Hello Peter website. Within a few days we then had our approval!

Since then the medical aid has consistently approved Angelina’s treatment, and we are very grateful. By the beginning of last year, her infections were still too frequent, and so we increased her dose and shortened the interval between treatments to 3 weeks. Since then she has really thrived, and has caught up in her growth a lot.

One of the most difficult things for me to accept is not having a definitive diagnosis to explain exactly what is wrong with Angelina, whether this will be a life-long battle, and many other unanswered questions. Finding a diagnosis is something we will not give up on, but at the same time we do not want to constantly be testing and traumatizing our little girl unnecessarily. We are very grateful to have wonderful doctors who we trust, to guide us in these important decisions.

Due to being chronically ill, Angelina has required Occupational Therapy to catch up on various areas of development, Speech therapy to help with her eating and we are taking her to Play therapy to deal with some issues that have come up due to the trauma of repeated admissions and everything that goes with it. Amazingly, despite all these challenges, Angelina is a bubbly, happy little girl, who captures the hearts of those around her!

As a family we have learned to deal with PID in our lives. We have changed our expectations of what “normal” looks like for us, and we just take one day at a time. The financial and emotional stress, administrative burden of following up accounts and medical aids, and trying to manage tons of doctors’ and therapy appointments while still holding down a job and looking after another child is not easy.  But we have wonderful supportive family, church and friends, and we have learned to accept offers of help and to let people know when we are not coping. We also like to go away regularly as a family to spend some stress free time together, and are very blessed to be able to do this. Getting to know some of the PiNSA members who have been through similar experiences has been wonderful, and it is great to be able to help and support others by sharing the lessons we have learned, or just by lending a listening ear.