I sit here and watch my 3 year old sleep. He has fallen into an exhausted, calpol induced sleep following hitting a fever of 39.2c and several bouts of vomiting.
I took him to the dr, perhaps he didnt need to see anyone, we could have rode it out at home, I previously always trusted my abilities to handle upset tummies and high temperatures. Perhaps I am right to follow my instincts and get him seen, the dr seemed to think that it could be a urine infection (except he couldnt give a sample) or a throat infection (his throat was very red, could be infection or could be due to the vomiting) Perhaps I am just that bit more cautious now, with him especially, given how ill he has been previously. This boy has over come so many hurdles. I watch him sleep and I think back to what we have seen.
At our 20 wk anomaly scan, unilateral talipes (club foot) was detected. We were referred for a more detailed scan with the fetal medicine consultant, and were offered the amnio tests. We were informed that talipes can often go hand in hand with other far more serious conditions and the subject of termination was even raised. We then had a further appointment with the paediatric consultant who went through the “treatment” methods with us, showing us photographs, without really answering any of my questions. I was told that I would need to forget my plans for a home birth because he would need to be seen by a paediatrician after birth and that he would need a hip scan.
Well fortunately our midwife was still very supportive of home birth and was happy for plans to continue. She reassured me that paed assessment could wait a couple of days and that a scan would be scheduled with an appointment so hospital or home made no difference. We were lucky to have the home birth that we wanted and planned. He came into the world, our perfect little happy footer, at home with the family downstairs waiting eagerly to meet him.
At 2 days old we attended the general hospital for his paed assessment. They needed to take his blood but due to his talipes they were only able to bleed one heel. This was an horrendous experience. He screamed, they were too slow, they had to do it twice because the first lot clotted, then they decided after 25 minutes of this torture that his heart rate was a it fast so he needed to be monitored. After this the dr examined him and declared him “perfect except for that foot!” This was not the thing to say, he was totally perfect!!
He had an undetected diaphragmatic hernia, Drs say that it was a weakness in his diaphragm, they think that when he had his first cast for his talipes treatment at 3 weeks old that the extra weight and him laying on his back caused it to rupture. We hit a monday night when he started crying, and then he didnt stop. He wouldnt feed. He wouldnt sleep, he just kept crying. Every now and again he would fall asleep exhausted only to wake crying again a few minutes later. This went on all night, and then progressed to him vomiting bile. I dialled 111 in the early hrs of tuesday morning and was advised to call gp as soon as they opened. Which I did. The receptionist was not helpful. I will never forget her telling me that it sounded like he had wind. I argued my corner and she put me down for a call back from the on call dr. Luckily he rang me immediately, he told me to come straight down, he warned me that he would in all likelihood send us to hospital but by this point I wanted a dr to see him before I got stuck trying to navigate rush hour traffic with a poorly baby. The GP examined him, and phoned for an ambulance. We were blue lighted to the general hospital where we were taken to resus and my 4 week old little man was poked, pricked and prodded. They didnt know what was wrong but they knew it was serious. I remember standing outside the room on the phone to my husband, him asking me to keep him posted and me yelling down the phone “we’re in f*cking resus!” It was some time later that the xray came back and the drs got a clear view of his abdomen. His bowel had moved up into his chest and was compressing his lungs making it immensely difficult for him to breathe. They got on the phone to Great Ormond Street Hospital surgeouns to check for a bed, and then the CATS team arrived. He was sedated and intubated and transferred to GOSH where the surgeon was ready and waiting, They had him prepped and heading to theatre within 15 minutes of us arriving. I hated having to sign those disclaimers. And i genuinely dont think i stopped crying from 9am that morning onwards.
We were in GOSH for a week. He was in NICU and then moved to a ward. But his recovery has been outstanding. I was horrified to discover (after the event) that the survival rate for CDH is only approx 50%, and that there is so little awareness of it. More recently I read here of a small child who died due to delays waiting for a repair surgery. Heart breaking.
He was 3 weeks old when he went into cast, his foot had been graded 6/6 which was the most sever grading. We were often told he had “a tricky little foot” we experienced several slippages. At one point he had to be out of cast for several days while sores healed. After 6 weeks worth of casts, he had his tenotomy. This was where they snipped the archilles tendon and stretched the heel, to hold it in cast for a further 3 weeks to allow the tendon to grow back longer. This procedure came with a lot of blood, and a very unhappy little guy who managed to slip his cast as soon as they put it on so it needed to come off and be re done immediately. Then the procedure wasn’t successful and he needed to be scheduled to have another at 6 months old under a general anaesthetic. But then we went into boots and bar. Two boots, with straps pulled as tight as they would go, held together at an angle 23 hrs a day. Try to imagine your biggest bulkiest hiking boots, done up as tightly as they would go so that you are unable to move your feet inside them. Now imagine your feet held together in those boots, shoulder width apart at all times. Feel good? No, I dont think it felt good to him either, given how much he cried.
But onwards with the boots and bar, a crucial part of his treatment for the next 5 years. So we had blisters. We had sores. I had dressings prescribed, sleep disturbed. I was kicked, i took a metal bar across the bridge of my nose when he rolled over in bed one night being a wriggle bum. 23 hrs a day, for 12 weeks. Then we were able to gradually decrease that time down to 12 hrs a day. We had leaky nappies and trapped wind. It was a challenge. Its easier now, he wears an ADM boot, so his feet arent held together in boots and bar anymore. Every night he wears his spring loaded ADM boot, this holds his foot in the correct position but still allows him to be able to walk. He is doing well, to see him running and playing every day you would never know anything was wrong. Would never know of the daily struggles to get his boots on, to rub his cramping legs, his sore skin on top of his foot. But all of these things tend to bring out that worried, over concerned mama bear as soon as he is poorly.
So it brings me to tonight. He is sleeping, sick bowl beside him. I am thankful for my children. The baby is asleep upstairs with his daddy. J is in bed sleeping. And A! well, she will be 16 soon, and she had no second thoughts about coming with me to the hospital to get her brother checked out. She grabbed his blanket, sat next to him in the car holding his bowl for him. We got home and she helped me carry our things up the stairs. Then as she took herself to bed she gave me a hug and said “shout if you need anything mum”
I know that whatever challenges life throws at me, as a person, as a parent, I will be able to tackle them. And I am reminded that when I worry and doubt and have those fears about a lack of formal education and worry that maybe I am failing my children (those wobbles that happen to all of us mums one way or another, lets face it, its bloody terrifying doing this parenting lark! Show me someone who says they arent winging it every single day and hoping for the best, Ill show you a liar!) I can look at these children and all that they achieve, and how much they help and have faith in other people and I know that they are good and decent human beings. That, right there, is parenting done right! Decent, loving, kind, respectful human beings who are loved.