Dounya and Atrioventricular septal defect (AVSD)

The Beginning

Saturday morning 16th August 2008 at 00.55 our beautiful daughter Dounya was born in Craigavon hospital, Craigavon, Northern-Ireland.

Everything seemed right, but she was already special because of the birthmarks on her little behind…mongolian blue spots they are called. Never heard of it before but they say it is common with children from mixed races. They will disapear when she is growing up though.

Dounya got her little checks and everything was fine so we went to the maternity ward and because her delivery was straight forward I was thinking we would leave the hospital on Sunday; but when the paeditrician checked her during his round on Sunday morning he picked up a murmur in her heart……and this was when our journey in the unknown started.

I could not leave the hospital with Dounya until she could be seen by cardiac specialists in the Royal Victoria Hospital in Belfast where they have a special children’s unit called the Clarke Clinic. The doctors did a lot of checks with her and they found that she had a congenital heart disease called Atrioventricular septal defect ( AVSD).

She will need a mayor surgery..and open heart surgery.

It sounded all so scary and I have to admit I broke down in tears. They told us that although it is a major surgery her AVSD seemed to be straight forward and therefore good to fix and that we should be prepared for Dounya getting more and more breathless, feeding problems, and poor weight gain before the surgery. They could not tell us as then when her surgery would be but it was more than likely to be before she was 7 months old. It all depended on how she would grow and if she stayed stable enough.

The first days after I heard the news I felt a bit lost and found myself searching the internet about Dounya’s condition. After I had read all those stories and facts it felt like it had nothing to do with Dounya because at that moment she was still doing very well.

That soon changed unfortunately…. and all became very real.

25th August had started fairly normal the two eldest boys went to school and I was at home with Sanae and Dounya. The evening before I noticed that Dounya was breathing quite fast and I asked Jamal if he had noticed that too. Was it beginning? So soon already?? We thought that the best thing was not to panic, because the doctors had warned us this would happen.

In the afternoon the midwife came to do Dounya’s check ups – and she was worried about her breathing. Straight away she phoned our GP to get an urgent appointment and we would be seen within the hour. The GP said “that her breathing was indeed fast and so was her heart rate”. “We might be over pre-cautious” he said but let her be checked out at the childrens A&E just to be sure she is alright…

I went to the A&E at Craigavon Hospital where they did an x-ray, an ECG and checked her SATS. It was not the way it should be. Dounya was in heart failure which basically means that her heart was not coping. The doctors said “that she was looking well for a baby in heart failure, not blue or pale but pink!!!”

The weight she had gained was not proper weight but fluids that her body could not get rid of.
She was sent up the childrens ward and put on the monitor.
I had to leave her behind…We just had her 5 days home…

The next morning was terrible when my other children went into the room searching for Dounya like they used to do every morning since we had brought her home. They love her very much and every morning when I brought her downstairs they welcomed her with a big cheer! However, this morning she was not there and I will never forget the look on their faces. I told them “Dounya has got a poorly heart and that the doctors need to mend it someday”. That is why she was not feeling well at the moment and had to stay in hospital to get better. I could not answer the question when she would be back because I did not know myself.

The days in hospital

Dounya was put on medications to get rid of the fluids in her body and a medication to stabilise her heart rate. She was feeding poorly and after 3 days she needed a tube through her nose which lead directly into her stomach (this is called a NG (nasogastric) tube.

I was juggeling my time between home and hospital, trying to be with Dounya as much as I could. It is hard to have a newborn that you cannot take care of yourself.

Every day I hoped for the news that we could take her home. It was 13 days before it came and I was over the moon when they said “the tube could come out too!!”

25th October 2008. Dounya is still on medication (digoxin, furosemide and spironolactone) and has to drink a special high calorie milk called Infantrini. She is slowly gaining weight. At the moment she weighs 3700 grams but she caught a chest infection this week and was not drinking well for 3 days so she probably has lost a bit. Fingers crossed that it wasn’t too much.

It is behind us now the reason being is that the 29th of December 2008 – a date I will never ever forget as long as I live. The day Dounya had her repair through open heart surgery.

How come that normally the hours just seem to pass in a blink of an eye but all of sudden the hours started to go by in slow motion?

On Sunday evening I had a talk with the surgeon, Mr. Gladstone, whereby he explained what he was planning to do and what could go wrong. How I wished he could have skipped that part!! I know he needs to but I freaked out when he told me the mortality rate is 5-10%. I kept my face straight at that moment but inside there was alot going on I can assure you! I signed the consent forms and when he left I really was in need of some fresh air. I stayed up with Dounya until late in the evening, I just did not want to leave her. I realised that it would be wise to get some sleep to be ready for the next day, I went up to my accommodation and I spent the night with my eyes wide open, all kind of thoughts were going through my mind! Just plain fear for what would happen in the day that was about to begin. Without sleep I was back on the ward early, to spend time with my brave little girl. The guilt I felt when I looked at her smiling and being in such good form! In just a few hours she would endure a major surgery and she did not have a clue. Thank god! The major surgery consisted of a full repair whereby the two holes where closed and the single AV valve was divided into two separate valves

I was not crying but when the ambulance crew came to take us from the children’s hospital to the main one my heart was in my throat and in silence I wrapped her in a blanket and followed them to the ambulance. The walk to the theatre was terrible, Dounya looking at me with so much trust in her eyes and then we arrived in the area where she would get sedated. I held her on my lap while they put the mask over her face and then I really could not stop my tears. Inside I was crying out: NO NO NOOOO not my Dounya!!! But I had to hand her over and leave her. That was so hard. The nurse who came along with us tried to comfort me which wasn’t a easy thing to do when I was towering over her, she was just a small lady!

We walked back together to the children’s hospital whereby I got myself a coffee and sat outside in total fear but whole heartedly trusting my daughter that she will show them!! I have often seen her fighting spirit in her eyes and I was and also needed to be sure she would get through this. I went for a walk, hoovered my room, lay on the bed, but decided I just wanted to be as close as possible to Dounya, so I just paced back and fort near the main hospital.

My brother-in-law came to support me thankfully, at least I had some distraction which was really helpful. Dounya went down for her open heart surgery at 8.00 a.m. and came out at 2.15 p.m. That was and still is the longest 6 hours of my life.

I was informed that it had gone well and I just kept saying in my head THANK YOU, THANK YOU, THANK YOU.

I was prepared beforehand of the sight that would great me when she was on Cardiac Intensive Care Unit (CICU) but noone can prepare you for the shock that you feel when it is your own child. A ventilator through her nose which was breathing for her, 3 drains coming out of her chest, 1 tube going in her neck, another in her groin, catheter, and machine beeping and buzzing all around. I saw her and needed to sit down. The toll of not eating, sleeping and being so so worried (constantly) was that I felt I would crash there and then! That is not what Dounya needed when she woke up. So I went to my room for some much needed sleep and after 2 hours I was back on CICU next to her.

The next morning she was taken of the vent at 8.00 a.m. and she managed to breath on her own. SHE DID IT!!!

They put an Oxygen box around her head to give her extra oxygen and gradually throughout the day the tubes and wires came out until finally the machines were stopped. When she opened her eyes she was really high on morphine and the look in her eyes was not the bright curious one I knew; when she made sounds it sounded more like a little kitten. I will never forget that. Overall she did well.

She could have already gone to the ward the day after surgery but when the surgeon gave the go ahead it was a bit late in the afternoon to arrange the transfer so she arrived back on the ward on Wednesday morning.

From there on things just went upwards.

Every day she improved a great deal and by Friday you couldn’t tell by looking at her that she had had an open heart surgery only 4 days before!! Her heart rate was bit low when asleep but they were not too worried about that and she resolved that quite good in the following days. Douyna was also not to keen on her bottles at first but since Saturday that has improved very well. She now takes up to 100 ml hourly, WITHOUT EFFORT!!!

After all those months of seeing her fighting to breathe and drink it is a joy!

The icing on the cake was that on the 5th January 2009 SHE CAME HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am so so happy and so very grateful that she has done so well, but most of all: I AM THE PROUDEST MUMMY!!

From now on 29th December will be the day things changed, and we will celebrate it every year as her heart day!!

To keep up-to-date with Dounya, please go to www.dounyamouhsine.blogspot.com

This is where Alexandra updates about Douyna .
Written by Alexandra Mouhsine