Coping with a baby who has physical problems is challenging for any mum - especially when medical treatment is ongoing. Four iVillagers share their experiences
- Hole in the heart
'He looked so small lying there covered in wires, but he didn't cry.'
Read Merith's story - Dislocated hip
'Rori had a very shallow hip socket on the left side and no socket at all on the right side.' Read Andrea's story - Tongue tie
'Sophie went happily into the theatre with her daddy while I shed a few tears outside.' Read Lydie's story - Cleft lip
'The consultant added that there are sometimes other chromosomal problems associated with clefts and that we could terminate if we wanted.' Read Shirley's story - DDH
'We'd always been aware plaster could happen, but never thought it actually would, when the consultant said that he'd like to put her into a spica cast' Read Hayley and Alex's story
Merith's story
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Told that her infant son had a hole in his heart, Merith (cl-merith) felt her own heart breaking |
I was devastated when I was told that my day-old baby son had a heart murmur. Iain weighed 9lbs 12oz when he was born in May 2003, and looked like a perfect, healthy baby. The doctor explained that he thought Iain had a VSD - a hole in his heart between the two ventricles.
He said that the murmur was loud so the hole was most likely small (like a river flowing through a narrow gorge, lots of rushing water sounds; a river flowing through a wide channel would make less noise). Before we could leave the hospital he had to have an ECG. He looked so small lying there covered in wires, but he didn't cry. I did though.
When Iain was 10 days old, we had to go to the baby clinic to have him checked over. I did my first public breastfeed in the waiting room. There were other breastfeeding mothers there too which made it easier. Breastfeeding Iain has made me feel that I'm helping him stay healthy - and doing something that only I can do.
When Iain was four weeks old, we went back to the clinic to check that he was feeding well, putting on weight and not going blue, all signs that the hole might be affecting him and could lead to surgery. Thankfully Iain was doing well.
Five weeks later my husband John and I went to see the heart specialist at The Royal Hospital for Sick Children, in Edinburgh. Iain had another ECG and an ultrasound so they could see exactly where the hole was and its size. Throughout the examination Iain was awake and calm. I held his hand as he lay on the bed.
The specialist confirmed that there was indeed a hole in Iain's heart. She tried to reassure me that Iain was doing well. The hole would probably close over in time, or just remain as a small hole throughout his life and not affect him in any way. Even so, my heart was breaking inside.
When Iain was five months old, the heart specialist came to the local hospital to see him. She was pleased with his progress as he was still putting on weight, feeding well and there was no sign of blueness. She said that she didn't need to see him until he was four years old. I felt very reassured though I couldn't imagine my baby as a preschooler. I wonder if he'll be as calm when the doctors examine him when he's a little boy.
The specialist told us to treat Iain as a normal child. She told us to be especially careful of his teeth as statistically Iain is at greater risk of tooth decay. If he ever developed an abcess it might affect his heart as impurities could be carried through the bloodstream.
Looking back, I wish I had not worried so much about it. But it's easier said than done, when it's your tiny baby who has such a serious 'flaw'. It's likely that the hole won't close over but Iain probably won't need an operation either. Hopefully, he'll be able to live with it and lead a normal life.
Andrea's story
I panicked when I heard the news, but I was inconsolable when my baby was immediately put into a Pavlik Harness. The harness was designed to hold her legs in a certain way so that when she kicked the top of her legs formed the hip sockets. It went over her shoulders, around her chest and had stirrups that went down her legs and over her feet to hold her legs in the 'frog leg' position.
She looked so fragile and small, but she didn't really pay it much attention. It affected me more than her. I wouldn't go to my antenatal group reunion because I didn't want to see the other mothers and their 'perfect' babies or to have to answer questions about the harness.
Luckily the weather was nice and Rori could wear dresses, which hid most of the harness. When we did leave the house, I was surprised by how many people knew the reason for the harness, or knew someone whose child had one. It was a lot more common than I realised.
I'm British but I've lived in Jamaica for two and a half years. I'd come back to the UK to have Aurora, leaving Neil, my partner, at home. I only expected to be away for eight weeks but my trip back to Jamaica was delayed indefinitely as I tried to cope with this new crisis.
My mum was a great comfort to me as I went through a range of emotions: anger, sadness, grief, an overwhelming feeling of unfairness. I wanted someone to blame.
The midwife mentioned that Rori might not have had enough room in my uterus to grow and this seemed plausible to me. She hadn't really moved around when I was pregnant, only fidgeted, and she was in the correct position for birth from about 24 weeks. I blamed myself. It was my fault. Of course this wasn't the case, but I believed it at the time.
By the end of the second week, with the aid of physiotherapy and the harness, Rori had made remarkable progress. Her left hip was healed and there was a definite socket on the right. We were told that the harness could probably come off after another three weeks.
However, the next scan showed that progress had slowed, and I was told it would be another three weeks before Rori could be weaned off the harness. Three days later we returned to Jamaica.
For me, weaning Rori off the harness was the hardest part of the whole experience as she screamed blue murder when the harness went back on. She'd had a taste of freedom and didn't want the harness on again; also Jamaica was so much hotter than the UK and the heat made wearing it much worse for her.
For the first week, we took the harness off for one hour every day; the second week, two hours and for the third week, four hours. During the fourth week, Rori was harness-free for eight hours and for the firth and sixth weeks, she only wore the harness at night.
Rori's last scan was on 21st December 2003. It took six weeks for the left socket to become perfect, and 12 weeks for the more severe right socket to form. Her hips are now absolutely fine. Looking at her you would never guess what she's been through. In fact she seems to be an early developer; she crawled at five months and walked at eight - possibly the brace strengthened muscles that normally would not have developed that early.
The experience was very hard for all of us. Although it seemed like the end of the world at the time, I am so thankful that hip dysplasia is a condition that can be fixed. Today I look at my healthy, happy, 11-month-old baby and I just feel grateful.
Lydie's story
No-one mentioned tongue tie, the midwives wanted me to bottle feed Sophie. I gave her formula but once home I dug out a breast-pump a friend had passed onto me which I used for three weeks, just topping up with formula if needed.
I managed to help breastfeed Sophie eventually through sheer determination and with the help of my health visitor who had discovered Sophie had a tongue tie. The little bit of skin just under the tongue was too tight and Sophie couldn't move her tongue around her mouth properly or lick her lips. However, I was relieved to learn that surgery would rectify the problem.
When Sophie was assessed at eight months the doctor said nothing about the tongue-tie, merely that she would see her again in four months. I realised I might have a struggle to get my daughter the help she needed. I saw another doctor who referred us to a paediatrician.
He listened to my husband and I voice our concerns but said that he considered tongue tie barbaric to treat and he would only perform the procedure if Sophie wanted it corrected when she turned 16. He said he would see her again when she was two.
Both my husband, Lee, and I were very disappointed by his attitude, but we were determined to get Sophie the help she needed - now. We searched the Internet and found a doctor in Southampton who sent lots of information. My husband and I agreed that if Sophie's tongue tie wasn't fixed by the time she was two years old we would pay for private treatment.
I informed her doctor and my health visitor of our decision. My health visitor, who was incredibly supportive, also assessed Sophie's speech. While she lacked the ability to pronounce words appropriate to her age, she did have a good range of vocabulary and understanding.
In time we were referred to a language therapist who supported my health visitor and myself and, after two consultations, we were referred to an ear, nose and throat specialist. The appointment took two months to come through but the consultant was fantastic. His view on tongue ties was simple: if it can be fixed, fix it. I was over the moon. We waited another couple of months and an appointment for the procedure was eventually set for March 5th. By now, Sophie was 31 months.
On the morning of the procedure we arrived at the hospital very early in the morning. A nurse showed Sophie her bed, and wrote her name in big letters above it - which delighted her. We were told we could play with Sophie until 9:15am, when we had to change her into her own pyjamas and put on a clean nappy.
At 9.30am my husband carried Sophie down to the theatre. A nurse and I went with them. I found it hard not to be able to go into the theatre but I was pregnant and I was told that if the anaesthetic couldn't be administered by drip, gas would be used instead, and that could prove a risk to the unborn baby. I said a cheery bye-bye to Sophie, gave her a kiss and she went happily into the theatre with her daddy while I shed a few tears outside.
When my husband returned with the nurse they both said that Sophie had been very calm, while having the drip inserted (so I could have gone in after all), chatting to the surgeon and his team. We waited about half an hour on the ward and then went to the recovery room where we found Sophie half sitting up, playing peekaboo with a nurse. A porter wheeled Sophie back to her bed, where she asked for a drink. The nurses bought her an orange squash, which she gulped down and asked for more.
The nurse suggested she try some food. We opted for rice crispies which Sophie devoured although she did struggle with biting her tongue. We checked Sophie wasn't wobbly on her feet and she went off to play with some toys and seemed very happy. At 1pm the nurses said she could go home and told us to give her pain-killers from then on. We came home feeling very tired; Sophie, however, was full of energy.
Today, Sophie is like any other happy, little girl. She eats normally and speaks well. She loves to show us her tongue and happily pokes it out of her mouth as often as she can. It can take several weeks for an older child to learn to poke her tongue out fully and I know when she does I will take a whole roll of film. I am so proud of her and happy that we managed to have the procedure done. It was her right after all.
When Andrea (cl-reagiles) learned that her newborn daughter's hips were dislocated, it felt like the end of the world
Aurora, my first child, was born with slightly turned-in feet on 15th May 2003. The doctor checked her hips and said that they felt fine, but he booked a hip scan anyway. He also gave us exercises to help make her feet turn out. Her hip scan was done at six weeks and the results stunned me. Aurora had a very shallow socket on the left side and no socket at all on the right. She had been born with hip dysplasia, which meant her hips were dislocated.
My daughter was born in July 2001 with a tongue tie, which wasn't noticed until she was four weeks old. Breastfeeding had become a major struggle for both Sophie and I, and the day my milk came in was a nightmare. I had blisters, Sophie cried herself hoarse and I blamed myself for having had a c-section and for being unable to feed her.