When life turns upside down

My baby Inarah was diagnosed with a congenital heart defect called Tetralogy of Fallot where there is a hole between the two ventricles of the heart and the narrowing of one of the pulmonary artery, This causes the blood flow to the lungs to be reduced and the blood with less oxygen to circulate in her body. Babies with this are also known as the Blue babies as they turn blue when they cry due to the lack of oxygen in their bodies.

It’s been 2 months or so since she was diagnosed and finally after a month or so we have all come into terms with it.

Let me start from the beginning:

I took her by chance to her pediatrician at Pantai for jaundice as she was looking a little yellow. He checked her and said he is worried as he could hear a murmur in her heart. He asked me to check with the pediatrician at UMMC who attended to her at birth as he would be the best person to make a diagnosis and see if there is a hole in the heart. I was listening to him but probably not really digesting what he was saying coz I didn’t even blink when he said “hole in the heart” I was just very calm. We were scheduled to see the pediatrician at UMMC the next week.

At UMMC, the pead checked her and detected the murmur, he made her cry and she turned blue in her lips and tongue. We did an x-ray and from it he said everything looked okay and the heart does not look enlarged. He said we need to do an echocardiogram to confirm. He scheduled the echocardiogram in 2 weeks. I was going through this whole process like a zombie. My heart and mind refusing to belief what was happening.

There was no way in which I could have waited 2 weeks in that condition and so scheduled an appointment at Gleneagles for the ultrasound in a few days. The next day, at night she was suddenly limp, almost lifeless, she refused to wake up even when I shook her. We rushed her to UH emergency and after getting her checked they wanted to admit her overnight for observation. I just could not stop crying then, seeing her being hooked up to all kinds of machines, to test the oxygen level in her body, to take her BP, an IV line in case there was an emergency and to take her blood sample to check for infections. I suppose I just was not strong enough as I kept leaving the room when they were putting the IV line and to see my tiny little baby being put through all that was just too much to bear.

That night at the hospital I just kept looking at her all night to see if she was breathing and praying to God to let everything be okay. The next morning the pead cardiologist came by and said she can be discharged as she is stable but she needs to do an ultrasound in a few weeks time. She said she suspects that it is more than just a hole in her heart.

I was just screaming in my heart as I just couldn’t understand why they just could not do the ultrasound there and then to confirm what was happening, why all this suspense. Just tell me once and for all what is the problem so that at least I can start to deal with it.

They are a government hospital after all and according to the pead cardiologist, her condition is not critical enough to warrant an ultrasound urgently. So if you are not hard core poor and your child is not dying you just have to wait in anxiety and have sleepless nights worrying until your child can be diagnosed?

I just couldn't wait and through a friend managed to get an appointment at IJN that very same day. At IJN as the pead cardiologist was doing the ultrasound, I was just praying for a miracle that she was okay and normal. again like a zombie I sat there while the pead cardiologist diagnosed her as having TOF.

She needs an open heart surgery probably when she is a year old or 8-10kgs. Until then it is very important that she is kept well, healthy and does not have any infections or blue spells. Babies with such a condition do not deal with infections well as they are already weak to begin with. If she does get any blue spells or her condition deteriorates she would need a temporary surgery where a valve will be inserted near the heart to help with the blood flow.

For a long time, I was just thinking about what I did or didn’t do during the pregnancy that might have caused this to happen, was it the wine I had in the first 3 weeks when I didn’t know that I was pregnant? Was it the times that I forgot to take my folic acid ? Why didn’t the detail scan that I did in the 5th month show such a defect when it is supposed to?

After waking around like a zombie for days and all the crying, denial and resentment I think I have finally come into terms with the situation. God has chosen to give me a child with this condition and so I know he will give me enough courage, patients and strength to deal with this.

Since then, I have actually seen 3 pead cardiologists, one in UH, one at IJN and the one at Gleanegles. The difference between them is that the cardio surgeon at Gleanegles has done many of such surgeries as soon as the child turns one or is 8-10 kgs or even earlier if there is a need, i.e. in case of an emergency, Whereas at IJN, they have a waiting list and if the child’s condition does not deteriorate they prefer to wait as long as possible, till 2, 3 or even 4 years.
After consulting all 3, I would prefer to go back to the pead cardiologist at Gleneagles.

Doctors at IJN can be difficult to contact. Once when she showed sign of limpness again, we took her immediately to IJN as it was day time and consultations clinics were open but the pead cardiologist was not available and they got a MO to check her. Whereas the guy at Gleneagles gave us his hand phone number to call at any time if in doubt about anything.

However, in case of an emergency we have been asked by to go to the nearest hospital which is either Pantai or UH. Unfortunately, there is also an issue of cost that we have to consider. I have to start looking at sources of funds that I will need for a year until the surgery and for the surgery and post surgery cost.

My concern in the meantime was on how to care for her. I have been told of the blue spells that she might have and signs that I have to look out for. Infact I have seen them when she used to cry when I used to give her bath in her first few days of her life when we were not yet aware of her condition.

Now, we don’t let her cry at all. We pick her up immediately as soon as she cries. And it does ot help that she has colic and starts to cry almost every night. They all predict that the blue spells will become more apparent and often when she turns 3 -4 months as she will be more active and will use her heart more then.

How I wish I can be around to look after her all the time but I have to work. My mom and my maid is all I have to rely on to care for her and I am glad to say that they have been doing a great job so far.

What makes it easier to deal with this is that she seems so normal. It’s easy to forget that she has this condition. She is otherwise a healthy happy child who just now has started to coo and smile (she will be turning 3 months soon) She has not had any blue spells since, alhmdullillah and I pray to God that that she remains well till her surgery and after.

I have spoken to a few who have had their child undergo open heart surgeries and they have been very helpful. I have been fortunate as I have my friends and family who are providing me with the support I need to see me through this. Special thanks to Lillian and all fellow mommies at MMB for being there and providing comfort.

I just hope God will continue to be with all of us and give us the strength to see this through.
Times like this you need someone or something to hold on to and I realise that HE is always there for me, always.