The phone call

Two weeks ago I took Kayden to his hospital appointment. It was a check up in relation to his jitters/movements.

On the very first appointment they had taken his bloods and wrote to us to say his neutrophils were low but that is normal in babies aged 5-8 weeks. He was 6 weeks old at the time of the blood test.

This time the consultant was extremely pleased with his progress and his jittery movements are no longer present. She also looked at his flat head and stated that it was due to being back to back to me in the womb and would probably resolve within 2 years.

Neil and I were so relieved to hear that Kayden was developing as expected and he was discharged from the hospital. It turned out that everything we were seeing in Kayden was linked to his traumatic birth and all would fade in time.

Two days later my phone rang and it was no caller ID. I answered the call and it was the consultant from the hospital. I assumed she had called for something trivia that had been forgotten.

However she started by saying Kayden’s blood test results were back from the lab. My heart instantly sank! Everyone knows that if your results come back and you get a phone call it usually means something isn’t quite right.

The consultant informed me that Kayden’s neutrophils level was still low at 0.5 and they should be 1 or above. She went on to explain that she would like him to have three further blood tests over a 9 week period.

This was to monitor if the levels go up at any point during the cycle. Ideally this is what we are looking and hoping for. She also said that they would like to test Layla as they are twins.

The consultant also said that we have a yellow card for open access to the children’s assessment unit. This is because with the level Kayden has he can’t fight bacterial infection himself.

If Kayden gets a fever then we are to take him straight to the hospital so they can put him on an antibiotic drip.

After the three blood tests if his levels haven’t risen then they will carry out further tests. The consultant did not go into detail at this point.

Of course I had previously used my friend/enemy google when the level was initially low at 6 weeks. I did this for knowledge and to prepare myself.

What I discovered is that if his levels remain low then this is called neutropenia. There are four different types;

Congenital (from birth) it causes the low neutrophils count and puts infants at risk for serious infections.

Cyclic (present at birth) this is what the consultant is checking as in the 21 day cycle of blood the count can change. This means that the low neutrophils last a few days and the rest of the time they are at a normal level.

Autoimmune neutropenia is where the body makes antibodies that fight your neutrophils. These antibodies kill the neutrophils, causing neutropenia. This is the most common but is not usually diagnosed till 7-9 months old.

Idiopathic neutropenia develops any time in life and can affect anyone the cause is unknown.

Other causes for low neutrophils are diabetes type 1, leukaemia, viral illness, anemia, deficiency in certain vitamins such as folic acid or B12. However as I am not a medical professional I am not sure which of these might apply to a baby like Kayden.

We now have to wait up to 9 weeks for the three blood tests to be carried out to find out if it is which neutropenia he has.

Depending on which one is present babies can grow out of it by the time they are 5 years of age and go onto live a healthy lifestyle.

Some of the information I have read states that I may have passed this on through the pregnancy. I guess I will have to wait and see if this is our case. At the moment the guilt is eating me up!

Ultimately I am very teary as you can imagine. Every parent wants their baby to be healthy and the thought of him getting an infection that he can’t fight petrifies me! I’m also worried that I won’t recognise he has a temperature in time to get him to the hospital and delay any treatment.

The consultant assured me that Neil and I are to keep Kayden’s life the same as it was and as a twin it is very important that we don’t affect Layla’s life by being over protective of them both and reducing their social events.

It is more important that they have the cuddles that they deserve, the love that they have from so many people and the opportunity to develop and meet their milestones like any other babies.

I am trying not to worry too much until we know what we are dealing with however after our losses it is very hard not to let my anxiety get the better of me.

All babies are precious whether they made it to their parents arms or stayed in their arms or hands for a while or grow up in their parents arms.

Layla was already taken away from us for a few days when she was in intensive care which broke me at the time. I don’t want Kayden to spend time in and out of hospital and I want them both to be in my arms all day everyday for the rest of my life.

I hope that I have passed on my resilience to them both but I also hope that in their lives they don’t have to use it too often or for anything serious.

I hope that I can use my own resilience to make it through the 9 weeks without my anxiety becoming overbearing. I hope that I can muster up my usual positivity and smile everyday.

I’m sure with being blessed in having them both here in my arms and hearing them both start to giggle I will have so much to focus on and laugh about that they will make each day a little easier.