Heminephrectomy; excision of part of the kidney
As I have previously written about my daughters medical condition, her duplex kidney and how she need surgery (heminephrectomy) I thought I would write an update as to how the surgery and recovery went.
During my first pregnancy at our 20 week scan all I kept thinking was is it a boy or a girl. I think we both forgot that this scan is also the abnormality scan, where they check that everything is ok with the baby. We were therefore both quite shocked when the sonographer seemed concerned. She said that she could only see one kidney, she tried to reassure us saying that it might be the angle of the baby or it might not yet be developed and not to worry we could go back for another scan in a few weeks to see if there was any change.
A few weeks later when we returned for the scan, we were told that our daughter had a suspected duplex kidney. Meaning she has a ‘double’ kidney, she also however has separate tubes from each part of the kidney that join into one as they go into the bladder. It was explained to us that a lot of people have duplex kidneys and aren’t even aware of it. Sometimes though having a duplex kidney can cause frequent urine infections which happened to be the case for our daughter.
We were told that once she was born she would be put onto antibiotics (trimethoprim) and further investigations would then take place.
My daughter ending up being on the antibiotics for over 2 years. During this time she had various invasive tests and frequent scans including a DMSA scan where she had to have dye injected so that the functioning of the kidney could be seen. She frequently had urine infections even though the antibiotics were supposed to prevent them. It got to the point where whenever we went to the hospital my daughter would automatically give the nurse or doctor her arm as she was so used to have something injected into her, it really was very upsetting. She also started having night terrors, she would wake up in the night screaming and crying saying she didn’t want anymore tests, she didn’t want to go the hospital, it was heart breaking.
The decision was finally made that surgical intervention was needed. We were hoping that this would have been scheduled quickly as I was now heavily pregnant with my second child, a little boy. During his 20 week scan it was also suspected that he had a duplex kidney, we were devastated. Another scan though revealed that he has in fact got a horseshoe kidney where the kidneys have not split and form one large kidney. Thankfully he did not need any antibiotics or surgical intervention.
Unfortunately our daughters operation was scheduled after he was born. This meant that while my daughter was staying in the hospital my little boy had to stay with his grandparents as the hospital was far from our home. She was only supposed to be in a few days after surgery but it turned into two weeks, only once I left her side to go home and sleep and that was so hard. My parents in law though were such a great support and they would drive down with our son so that we could all see him. It felt like we were choosing between them and it broke my heart when they brought him down and I could see how much he had changed in that short time, he had grown so much bigger and his personality was really developing and I was missing it all.
The operation went well, they were able to remove the top part of her kidney which was holding stagnant urine. It was horrendous seeing her afterwards though, even her face looked swollen. When she came around all she wanted to do was stand up and cuddle us which took so much of her strength, she really has been through so much. Afterwards her recovery was slow and her temperature would keep spiking but they didn’t know why. Eventually though we were allowed home, we could be a family again.
We want her to know what she has been through so we created a special photo book that explains it all and includes photos from her time spent in the hospital. She has now started nursery school and is completely off the antibiotics and is fit and healthy. Both our children still have yearly check up at the hospital.
Nothing can prepare you seeing your child in the way that we have, knowing that you’re supposed to be there and protect her and you cant but now we look forward to a healthy and happy future together.