The Story of Gustav
Gustav was born a month early. The first thing I saw when Gustav was born was all his dark hair, and then I could see him pee. From what I could see, this could only come from a boy. “We got a boy,” I said, but I did not get any reply. The midwife acknowledged that our baby was a boy but called for a doctor to take a look at him.
There was a strange mood in the birth room. Gustav’s scrotum was intact, but his penis was hidden. The doctor arrived and was unsure whether she could feel his testes, which at that time had not descended to the scrotum.
The following days at the hospital went with a lot of visits from different doctors. They all arrived with the pretext that they had to check his weight. What they really came for was to see Gustav’s genitals, which in their world was very exciting. Even nurses flocked around us when he was weighed. It was very humiliating and very difficult to deal with.
On the fourth day after his birth, Gustav was scanned, and we could see that he was born with two testes, but with no ovaries as the doctors feared.
We were sent home 10 days later with an appointment to see a urologist who had lots of experience in cases like Gustav’s. Tense and very nervous, we met 3 weeks after Gustav was born with the urologist. Meanwhile, the chromosome tests had shown that he was a boy with no chromosomal problems. The urologist looked at Gustav and told us that it was a common thing to see that the penis was hidden on premature boys. We felt relieved and went back home.
Then Gustav began to cry every time he peed. It was clear that he was in pain every time he had to urinate. We started to search on Google to find similar problems with other prematurely born boys. We found nothing, and we began to doubt the message we had received that "the penis would grow out in time."
We contacted the largest hospital in Denmark and got an appointment with a pediatric surgeon. He was a man of very few words, and he said that Gustav was born with what he called a buried penis and that he would need to operate when Gustav reached the age of 3 years. The doctor ignored the pain that Gustav had when urinating.
Very unhappy with the doctor’s judgment, we went ahead and asked the department of growth and reproduction to examine Gustav. The department of growth and reproduction looked at the issue from another angle. They could feel that the shape of the penis under the skin was abnormal, but they could not give any diagnosis. They saw the pain that Gustav had while he urinated, and they decided to investigate him further.
An entire year went by with examinations and discussions between the department of growth and reproduction and the surgeon about the diagnosis, which they did not agree on. We talked with leading researchers in the malformation of sex organs, and all had doubts. Finally, a doctor decided that we should have another opinion from another hospital. At a hospital in Aarhus, they had a cooperation with the English doctor P R. Dr. R is a world-renowned doctor. He visits Skejby two times a year to take care of complex diagnoses and to train the doctors there.
Gustav woke up in pain at least 10 times during the night to try to pee. Every time it could take up to 20 minutes before he was done. I could not maintain my work since I was too tired. My husband and I split up, so we slept separately. I slept on the weekend, and he slept during the week. Gustav’s older sister was also affected, as none of us was ever at the top of the priority list.
At the age of 18 months, Gustav met Dr. R in November 2006. Dr. R studied Gustav for about 2 minutes. His diagnosis was severe phimosis, buried penis, and epispadias. The next day, Dr. R operated on Gustav for 4½ hours.
After the surgery, Gustav had to stay in his hospital bed for 7 days. A catheter was placed in his urethra and was taken out under anesthesia. Unfortunately the urethra closed up the same day as he got the catheter out. A catheter was placed through his stomach and remained there for 3 weeks. Subsequently, Gustav had three more operations before his urethral opening was fine. All in all, it took 3 months before Gustav could go back to preschool and I could work again.
Gustav is now 3½ years old and still has pain when he has to pee at night. He is taking medicine for bladder spasms that has helped him to sleep well at night. He is aware that he looks different. He is aware that he will need help from doctors to help his penis out.
For us as parents, it has been a hard experience not knowing what to do and not being given any help or information to begin with. What we have achieved we only have achieved because of our persistence and the feeling that something was very wrong from the beginning. Throughout the process we have had to visit doctors, get the right information, and stay informed. It has been a lonely road, and we have wanted to speak with other parents.
We need some tools for how to deal with Gustav’s situation in the future. We have spoken with a 30-year-old man also born with congenital anomalies of the genitals. He says that it has been really hard, especially since it is not always recognized that there is a psychological impact when a man cannot feel like a man.
It is my hope that more information will be given to hospitals, schools, etc. to make life easier for the growing group of boys who every day all over the world are born with deformities of the genitals.